Shepherd Sluggers

Originally Published in the Atlanta Journal-Constitution

The Shepherd Sluggers may not have won the Wheelchair Softball World Series in August, but the team had its best-ever finish and believes it could be champions in the future.

Shepherd Center, Atlanta’s premiere brain and spinal cord injury rehabilitation center, offers the Alias Family Sports Teams program, which enables individuals with physical disabilities to participate in sports on a recreational or competitive level. There are 10 teams that compete in local and regional competitions, as well as at the national and international levels. From fencing to water skiing, it is the largest disabled sports program in North America, benefiting many, including Kyle Benedict, shortstop for the Shepherd Sluggers.

Benedict was 16 when he was snowboarding near his home in upstate New York and had a freak accident.

“I was a very experienced snowboarder,” said Benedict, 42. “I went off a jump, not trying to do a crazy trick or anything. I got inverted and landed on my back. I’ve been in a wheelchair ever since.”

Benedict was in the hospital for 86 days for his spinal cord injury, which left him with paraplegia.

“It was tough being a teen. You already have enough to handle, then a huge life event like that happens. But the support around me was incredible,” he said. “I had friends in my hospital room every day and an entire wall papered with cards.”

Renovations were made to his family home to make it accessible for his wheelchair. That process gave him a new perspective of architecture as well as professional inspiration.

After graduating from high school, he moved to Georgia to attend Savannah College of Art and Design. He studied architecture and went on to open Commense Design Studio, a firm he’s owned for 12 years.

A couple of years after moving to Georgia, Benedict reached out to Shepherd Center in search of volunteer opportunities. He met Shepherd’s sports director, Matt Edens, who told him about all the sports he could try. Benedict ended up on the basketball team, the Shepherd Stealers.

“That was my first exposure to adapted sports and I loved it,” Benedict said. “I was a very active kid and teen, and it felt good to be back at it. But I learned basketball is tough when you have an injury like mine. It became frustrating for me. It’s hard not to be successful when you’re competitive.”

When Edens told Benedict he was thinking of starting a wheelchair softball team, Benedict’s answer was immediate: “I said, ‘Hell, yeah!’”

The team starts practice in April and plays through the end of the summer, when they travel to play in the Wheelchair Softball World Series.

“It was hilarious how bad we were in the beginning,” Benedict said. “I and one other guy have been on the team since the start, and it’s been quite the evolution. I don’t think a lot of people understand the competitiveness. Yes, it’s open to everybody, but we want players who are all in and understand we play to win.”

As with any sport, Benedict said wheelchair softball is not without frustrations. The thing that bothers him most is when players on other teams walk to the plate, then sit in a wheelchair to hit the ball.

“There are some full-sized dudes with all their faculties, smashing the ball with their big, strong hands, while our entire team swings the bat with one hand,” he said. “There are politics and bureaucracy, but a rule change is necessary and would make it more fun. All things considered, we’re still happy with our accomplishments.”

This season, the Sluggers played in four tournaments, winning two and finishing second in the other two. Through the Alias Family program, the players are provided with sports chairs and lodging, and travel expenses are covered for the World Series.

“I don’t know of any other facility that cares for their athletes the way Shepherd does,” said Brandon Clift, Shepherd’s sports specialist and coach of the Sluggers. “Gear, jerseys, flights, hotels — when a participant shows they’re committed, this program takes care of those things that can be a burden.”

This year, the World Series was played on Aug. 15-17 in Omaha, Nebraska. About 20 teams competed.

“There’s a wide range of skill level amongst the teams,” Benedict said. “Because of that, they break them up into two divisions, which means there are two champions. We’ve always been in the second, lower division, but this year we played in Division 1, which made us really proud.”

The team played six games over two days. Their final game was against a team from Chicago, the Hawks, who the Sluggers lost to earlier in the season.

The Sluggers led 8-4 going into the sixth inning, but that’s when things began to unravel.

“We play seven innings in wheelchair softball,” Clift said. “In the bottom of the sixth, there were some balls that came off the bat funny. One was a line drive that hit someone’s chair, and standard plays turned into bigger deals.”

The Sluggers still led 8-7 going into the final inning, but things again didn’t go their way.

“It was a game we shoulda, coulda won. It was heartbreaking,” Clift said.

The Sluggers lost 11-8 and placed finished sixth in Division 1.

“The great takeaway is that we improved so much and other teams around the country saw that we are legit,” Clift said. “We had our best team yet out there and I’m proud of how they played. I believe in the team and think we’ll continue to move up the rankings until we hit the top one day and win the World Series.”

Benedict believes the team will continue to improve. But in the meantime, he is just grateful for the opportunity to play the game he loves.

“We’re lucky to have not just such a great program, but amazing volunteers, like Brandon, who give their time to coach these teams,” Benedict said. “Anyone with a disability, light or severe, has the opportunity to play sports in some capacity and that’s incredible. It’s great to spend time with other disabled people and have that unique camaraderie.

“Our lives are all better because we have this outlet.”

Flowing with Blessings

Originally Published in the Atlanta Journal-Constitution

Nicky Crawford is on a mission to serve Atlanta’s unhoused community, and his most recent venture — the Wash Bus, a mobile laundry service — is powered by the ingenuity of students from Georgia Tech’s School of Industrial Design.

It was years ago when Crawford, 72, who is retired from a decades-long career in construction, was up late reading and came across a story about a man who handed out toiletries to homeless people. The man realized those people had nowhere to shower and use those toiletries, so he purchased an RV with a shower and solved the problem.

“It was a few years later when God brought that story back to my attention,” said Crawford of Stone Mountain. “I tried to figure out how I could do it, how I could provide showers for unhoused people. Could I get a big truck? Could Marta give me a bus? Finally, in 2021, I found a church out in California that had built a trailer of showers out of a car hauler.”

Crawford reached out to the pastor of that church, who invited him to see how they operated their shower trailer. Around the same time, Crawford found a trailer for sale that had been converted with three three-piece bathroom stalls — a sink, shower and toilet in each. He purchased the trailer with his own money on Feb. 2, 2022, and decided to pursue Flowing with Blessings, a nonprofit that would encourage proper hygiene, restore dignity, and offer fresh hope through hot showers.

He didn’t know where he’d serve or who would help him, but trusted he’d figure it out.

About a week after purchasing the trailer, a friend of a friend, a doctor who works at Grady Memorial Hospital, reached out to Crawford and invited him to set up the trailer in the hospital’s parking lot for a trial run.

“We had four people that first day before we even publicized it,” said Crawford. “We had 17 people a day at the end of four weeks and now it’s about 50 people twice a week. We also have an overflow list in case we can accommodate extras. I asked Grady if we need to meet to discuss the trial, but they said no, keep going. That was 2 1/2 years ago.”

Flowing with Blessings is a first-come, first-serve operation. There’s always a line of regulars waiting when Crawford pulls up in his silver Silverado, hauling the shower trailer.

Showers are offered from 9 a.m. to 2 p.m. on Tuesdays and Thursdays beneath the covered area that connects the parking deck and the emergency room building. Around a dozen volunteers are led by Crawford’s daughter and chief of operations, Christina Moss. The volunteers clean the bathroom stalls after each use and provide people with toiletries, underwear, socks, and a change of clothes, if needed. One volunteer often brings pans of home-cooked delights like fried chicken and vegetables, enough to feed the crowd.

In early 2023, a young woman stepped out of the shower truck still bearing a strong odor. Crawford realized that, though she’d just showered, she was back in the filthy clothes she’d been wearing before.

“I had to figure out how to wash their clothes,” said Crawford. “Thus, the bus.”

Crawford purchased a smaller school bus in 2023, as well as seven washers and dryers. An e-mail was sent to Georgia Tech to inquire if anyone could help with the installation.

“I saw that e-mail and immediately thought ‘yes, this is a great project for my students,’” said Stephen Chininis, professor of practice at the College of Design for the School of Industrial Design. “Nicky had an idea and didn’t know where to start — that’s the perfect project for industrial design. We don’t mind if there are a lot of questions to be figured out. Industrial design is exactly that, the architecture of a product.”

Chininis is always looking for projects for his students. He gives them five to six to choose from and then they work on the project for a semester and receive a grade at the end.

“It’s hard to find a really good impact design project, something that affects the community and the world,” said Chininis. “I have plenty of students who are more motivated by that than making money at corporate design. When Nicky brought the bus over, the students were immediately excited, talking about all their ideas. There were five students involved and they were completely self-motivated. In fact, one student hadn’t been attending school much. He’d been having a tough time, but the project brought him back. I think this project gave the students more meaning.”

The students had to figure out the layout of the bus, how to transport water, how to get rid of water, workflow, and even came up with graphics and promotional pieces for the Wash Bus.

“Nicky immediately took the plan and started to build everything,” said Chininis. “Some of our students stayed involved beyond the actual assignment. One graduated and still volunteers with the project. You can’t help but want to help these folks.”

Crawford and Moss said the showers and clean clothes lead to other good things for the people they serve. Not only does cleanliness help with preventive health care, but it also makes people more presentable for job interviews and to attain housing.

“They come out of that shower and they’re like new people,” said Crawford. “They’re just like you and me. They want someone they can laugh and talk with, someone who shows concern for them. Christina will help them with housing, medical situations, banking. They inundate her with all kinds of things, and she does all she can. When they’re out on the streets they have to be so tough, but when they’re with us they’re our guests, like friends in our home. We get them to soften up and let them know they’re OK. We look for them, often find them asleep on the ground. We wake them, tell them we’re here, and it’s their turn.”

Chininis — who gave his students an A for the Wash Bus project — said industrial design folks refer to ideas like Crawford’s as insight. Crawford said it was simply obedience.

“God’s hand is all over this. I know what I heard. I’m just doing what I was told.”

To learn more about or to make a donation to Flowing with Blessings, visit www.flowingwithblessings.org.

Wilson Barron

Originally Published in the Atlanta Journal-Constitution

Don’t underestimate Wilson Barron — the Atlanta Braves certainly don’t. Wilson is employed as a greeter at Truist Park. As guests flood into the stadium, he stands in the lobby outside the Xfinity Club, tossing balls to guests and hyping them up before games. And when they ask him questions, like the location of their seats, he answers them with the help of a device that speaks for him because Wilson is nonverbal. His job is the culmination of hard work and a heap of people who share a vision for inclusivity, and it’s proof that no dream is too big. “I’m just getting started,” Wilson said.

The Wilson Bus

Rachael and David Barron welcomed Wilson, the first of three sons, into the world 26 years ago. After a healthy, typical pregnancy, Wilson was delivered via emergency cesarean section and presented with breathing difficulties. He was transferred from Northside Hospital to Children’s Healthcare of Atlanta at Scottish Rite, where a geneticist performed a spinal tap and declared he would not live beyond age 4.

“She was wrong,” deadpans Rachael, 55.

When the Barrons witnessed the first birthday celebration of a neighboring baby in the neonatal care unit, a baby who had never left the hospital since birth, they became determined to get Wilson, 10 days old, discharged.

“They told us we couldn’t, and we said we were doing it with or without their approval,” said Rachael. “They taught us how to use a pulse oximeter and apnea monitor. We went home and the alarms didn’t stop sounding until he was 4 months old.”

The Barrons relied on their pediatrician, who helped them connect with specialists and therapists, and they learned a lesson that continues to guide them as parents.

“We drive the Wilson bus and people are invited on and off as experts, but ultimately, we’re in charge and responsible.”

School Years

For the first couple of years, Wilson had terrible episodes where he’d hold his breath so long that his heart would stop for up to 30 seconds. He was diagnosed with cerebral palsy at age 2 and had a pacemaker inserted shortly after.

“My friends’ babies were rolling and walking, and Wilson was still laying on the floor,” said Rachael. “They were at play dates, and we were at therapy.”

The early years were exhausting. The Barrons were in constant pursuit of the next best thing that could help Wilson.

Through fervent searching, they discovered an alternative muscle integration therapy called the Feldenkrais Method that claims to reorganize the connection between the brain and body to improve movement. They crossed the country, taking him to specialists in New York and San Francisco, who encouraged the Barrons to discontinue physical therapy, lay Wilson on the floor and let him play and explore at his own pace. He learned to crawl when he was 4 and was 6 when he learned to walk.

Along with his physical delays, Wilson’s speech did not develop. When he started school, the Barrons were disappointed to discover that the public-school system expected very little of him and focused on what he couldn’t do instead of what they could do for him.

“Perhaps I am just obstinate, but when people say someone can’t, I want to find a way that they can,” said Rachael. “Also, that is what I see as my role as a parent, to give my kids a push and at times a ramp to launch them to the best of their ability. Maybe one kid needs more time or support than another, but that only makes it more worthwhile.”

To make sure Wilson would grow and develop new skills, she learned to “surround (herself) with people who can buy into your person’s vision. If they don’t believe or if they try to limit, they don’t belong on the team.”

Rachael home-schooled Wilson for years, teaching him how to read with letter magnets. As he grew older, he struggled with math, but his language comprehension is on par with his peers.

Seven years ago, Wilson began using a program on his iPad called TouchChat, a communication solution for individuals who have difficulty using their voice. Wilson has the option to select vocabulary words to express himself or he can type out words and TouchChat will speak for him.

He eventually went back to public school and graduated high school at age 22. That’s when Wilson’s team, comprised of family and professionals, convened to figure out his next step.

Family Life

Wilson lives with his parents, a few dogs, and a cat in an old-turned-new home in Atlanta. David recently retired from a career as a management consultant, and Rachael is the founder and CEO of Effective Students, a business that provides executive function coaching services to students from grade school through college. Her experience raising neurodiverse learners inspired the company that is nearly 10 years old.

Wilson’s two younger brothers, Wyatt, 22, and Walker, 20, have flown the nest but maintain a close connection with their big brother.

The Barron family thrives on humor, mutually picking on one another, most often Walker, and Wilson is right in the mix.

Wyatt and Walker have always been protective brothers, even correcting a doctor years ago who spoke as if Wilson couldn’t understand anything he was saying.

“He may not have speech, but he has language,” the younger brothers piped up.

When Wyatt become a hunter, he insisted that Wilson needed to learn to shoot, too. Wyatt pulled Wilson up into the blind, reminded him not to make any noise and helped him shoot his first deer.

“That’s just the kind of brothers they are,” said Rachael.

Not Just Any Job

Meaghan Timko is the founder and owner of Parallel International Consulting, a company that helps families transition their neurodivergent or disabled child into and through adulthood. She, along with a resource called Together We Care, helped the Barrons put together their first team of caregivers and facilitators to provide respite care and to take Wilson on outings throughout the week, enabling him to fill his days with activities and purpose.

Parallel offers scaled pricing for families. They also provide private consulting services by the package or hourly rate. Since the services provided by schools and state agencies were not adequate, the financial piece to Wilson’s care has been costly.

“It was through enormous effort and investment of time and resources to secure private providers who were able to teach him in a way he could thrive,” said Rachael.

Her advice for other families like hers is to “educate yourselves, attend meetings to support one another, meet your legislators and inform them of what’s happening. If your child has graduated from high school, make sure they are receiving family support services through the Georgia Department of Behavioral Health and Developmental Disabilities funded by Now/Comp Medicaid waivers. If they are in school, she says, make sure their transition plan includes activities of daily living, communication and self-care. If it doesn’t feel right, it probably isn’t. If you’re told no, ask why. We as parents must advocate for our children, and we should have an equal seat at the table in doing so.”

Wilson has a facilitator eight hours a day during the week. His schedule is bustling with workouts at ReClif, a fitness-based therapy center; Bible study with young adults with disabilities; volunteering at the Humane Society; jaunts to the grocery store; and lunches out at restaurants. He is also an athlete with the Kyle Pease Foundation and just finished a half ironman with two teammates in August.

In 2020, Timko met with the Barrons to explore the possibilities for Wilson’s future. He’d interned at the YMCA and served as a greeter at his church, but he expressed the desire for a bigger job like other young men his age had.

“We had to think outside the box and ask lots of questions,” said Timko. “We wanted to help him find not just any job, but a job he really wants. Wilson has always loved sports, and he loves baseball the most. We decided to go big and help him pursue a job with the Atlanta Braves.”

The first step was getting everyone on Wilson’s team to see the vision. The speech language pathologist had to make sure Wilson’s speech device would be programmed with the necessary language to be a greeter and the occupational therapist worked on his physical mobility. Everyone on the team has a role to play.

“Our job is to figure out how to get clients from point A to B,” said Timko.

With a facilitator at his side, Wilson showed up for his job interview in 2022 on time and well-dressed. He shook hands, went through two rounds of interviews and landed the job.

“Wilson is not the first nonverbal staff member hired for our gameday staff, and I don’t anticipate him to be the last,” said Katie Hearn, manager of gameday staffing and administration and club ADA coordinator for the Braves. “Our gameday staff is a diverse group of people who have a passion for providing excellent service in their own unique way. If an applicant shows us their desire to commit to being a member of our gameday staff, we try to work with them and their job coach / support staff to find a role they can succeed in.”

The Barrons are overjoyed by the Braves’ willingness to accommodate Wilson.

“From parking to making sure he and his facilitator have easy access to the stadium, they have been so inclusive and have made it to where nothing is hard,” said David, 62. “And the guests have received him just like anyone else, saying hi when they recognize him, they smile at him, and they’re kind.”

Wilson is wrapping up his third season with the Braves, and he expresses nothing but joy for his job.

“Helping others and making guest experience fantastic,” is how Wilson described his job. Asked about the hardest part, he typed, “I have an exceptional team that helps me out. It’s not hard.”

Timko has visited Wilson at work a few times.

“Seeing how happy he is at work makes me so happy. That’s my motivation,” said Timko. “I’ve known him long enough to read his posture and his presence. I can see that he’s really proud to be there. I think this job has changed a lot in him. It’s shown him what he’s capable of.”

Not long ago, Timko asked Wilson what was on his bucket list. It was vast and included things like run a marathon, go horseback riding, indoor skydiving, skiing, go to New York City, be on TV, be in a print ad, get a tattoo, ride in a limo. Wilson then used his device to type words so profound they brought tears to Timko’s eyes. She wrote them down and said she will keep them forever.

“My motivation is burning in my heart. My body shows no such flame,” Wilson said. “Don’t underestimate me and the intellect I have been given by God.”

His message may not be loud, but it is clear. Don’t underestimate Wilson Barron.

25 Years After Hand of Hope Photo, Man with Spina Bifida Continues to Inspire

Originally Published in the Atlanta Journal-Constitution

Sam Armas had no idea how to play handball just a few months ago, and now he is preparing to compete in the Wheelchair Handball World Championships in Cairo, Egypt, starting today through Sept. 21.

Crazier things have happened to him — like becoming famous for a photo taken of him while he was still in utero. Born with spina bifida, Sam, 24, said his entire life is proof that everything works for good.

Sam’s mom, Julie, was 14 weeks pregnant with him, her first son, when she learned he had spina bifida, a birth defect that occurs when a baby’s spine does not form normally. As a result, the spinal cord and nerves are exposed and often damaged.

“My parents tried to get pregnant for years, and when they finally did they were faced with all those unknowns,” said Sam Armas, of Villa Rica.

Julie and Alex, Armas’ dad, learned about an experimental fetal surgery for spina bifida being studied at Vanderbilt University. Performed while the child is in utero, the procedure closes the lesion and minimizes other issues, such as a Chiari malformation, a neurological disorder that causes hydrocephalus, an excessive accumulation of fluid in the brain.

The Armases were approved for the operation and learned that USA Today wanted to cover the surgery because 21 weeks gestation was one of the earliest fetal surgeries ever conducted. After some hesitance, Julie agreed to allow a photographer into the operating room, which is how the Hand of Hope photo was captured.

During the surgery, the photographer, Michael Clancy, watched a tiny fist burst through an incision on Julie’s uterus. The hand flailed back and forth, then the surgeon grabbed it and the little hand, Sam’s hand, squeezed the surgeon’s finger. Clancy captured the remarkable moment, and the photo was featured on the cover of USA Today on Sept. 7, 1999 — the Hand of Hope.

The photo, recognized worldwide, has followed Sam Armas throughout his life. He learned of his fame when his elementary class Googled themselves, and he has garnered plenty of attention from anti-abortion groups who refer to the photo as evidence of life before birth. Last fall, while Armas was in Italy for a professional wheelchair basketball game, a reporter knew exactly who he was and asked to interview him about the Hand of Hope photo.

Armas learned how to walk at 21 months old and has worn braces on his lower legs to support his ankles ever since. He relies on a wheelchair for extended distances, like when he travels, and for sports. He grew up playing every sport he could. He tried wheelchair tennis and adaptive swimming, but his favorite sport as a child was baseball.

“It was able-bodied baseball, and I was a pitcher,” Armas said. “I didn’t throw any breaking pitches, but I threw heat. It was a lot of fun, but when I got to the point where I could hit the ball to the outfield and still get thrown out at first because I was running so slow, I moved on to wheelchair basketball.”

Armas played for BlazeSports America, adapted sports for youth and veterans, from grades 6 to 12. He loved wheelchair basketball so much that he narrowed his college search by schools with wheelchair basketball programs.

“I was recruited by Alabama, Auburn, Southwest Minnesota State, Mizzou and Illinois, but the visit to Auburn sold me,” Armas said. “The appeal of staying in the Southeast was nice, but it was also a very new program and I loved the coach’s vision for the team.”

As Armas worked on his bachelor’s and master’s degrees in public administration, he played five seasons of wheelchair basketball at Auburn. He also played wheelchair basketball for the under-23 USA team in the 2021-2022 season. He traveled to Phuket, Thailand, where the team won sixth place in the world championship.

He graduated with his master’s in May 2023 and began working for the Georgia Vocational Rehabilitation Agency, helping disabled people get employed. He would love to work for the federal government one day and has no plans of slowing down with sports.

Last fall he played professional wheelchair basketball for GSD Porto Torres in the Serie A Italian league. He is unsure who he will play for this upcoming season, but he has another sport to focus on in the meantime.

“Handball is a very pleasant surprise that occurred over the last few months,” Armas said. “One of the assistant coaches from Auburn, Ford Dyke, is the head coach of the U.S. wheelchair handball team. He knew I’d never played the sport, but he asked me to come try it out and I thought, ‘Why not?’”

Handball moves quickly. It’s essentially like soccer with your hands, Armas said, with a goal on each side of the court and four players from each team trying to get the ball in the net.

“I’m familiar with that throwing motion, kind of like pitching, and have taken to it quickly,” Armas said.

So quickly, in fact, that he made the final cut to make the U.S. team that will go to Egypt to compete in the World Championships. Joining him on the 10-person team are two other Georgians — Atlanta’s Elizabeth Pentecost and Lawrenceville’s Najee Smothers.

“I can’t wait to see the pyramids and museums,” Armas said. “I’m a history nerd, so seeing archaeological hieroglyphics, mummies and tombs would be so exciting. I feel fortunate and know only good things could come from an opportunity like this. Wheelchair basketball will always take priority, but I’m so excited to play handball and to go represent the USA in an international competition. Regardless of the sport you’re playing, it’s always a privilege to wear those three letters across your chest and compete.”

Armas said he often forgets he has a disability but never shies away from the conversation.

“What an awesome testament that God is always in control,” Armas said. “My start was not necessarily ideal, but look how it’s all worked out.”

Mom Finds Hope in Painting After Losing Conjoined Twins

Originally Published by the Atlanta Journal-Constitution

Breana Dell heard one heartbeat at her ultrasound in November 2023, but there were two babies — conjoined twins — a medical phenomenon that occurs once in every 50,000 pregnancies. Connected at the heart and unable to be separated, Dell always knew her babies would not live long after birth. As she grieves for her babies and what could have been for her family, she’s found solace in an old friend — her paintbrush.

Dell met her husband Matthew in 2019 while working at the Chick-fil-A in LaGrange. They were both college students who worked the night shift, he as a supervisor and she in the kitchen.

“Matthew is very gentle, laid-back, and has a servant’s heart,” said Dell, 24. “I’d never experienced someone like him before.”

Swept up in a love that felt easy and meant to be, the couple got engaged less than a year later and married in May 2021. They were eager to become parents and left the timing up to fate. Their son, Dallas, arrived in October 2022.

“When he was born, we wanted to surround him with family and wide-open space,” said Dell. “We moved to Matthew’s family property in Gay, just south of Peachtree City. We live in a tiny apartment attached to a horse barn. Dallas sleeps in a closet because our space is so small. We’re still hoping to build a house; that’s always been the plan.”

It was Aug. 8, 2023, when Dell learned she was pregnant again. Her first pregnancy was typical, aside from having polyhydramnios, or extra fluid, and she was hoping to have a home birth this go-round.

When Dell was about seven weeks along, her midwife came to her house with a doppler and ultrasound machine. Dell hoped to use an ultrasound picture to share the news with friends and family. Despite seeing what Dell calls a “tiny butterbean” on the screen and hearing one healthy heartbeat, the midwife was unable to get a good image.

Dell learned her sister in Florida also was pregnant, and they decided to share a gender reveal party during the week of Thanksgiving.

On Nov. 16, Dell and her husband went to an ultrasound boutique to learn their baby’s gender, but instead received news that sent their world crashing down.

“Not only were there two babies, two baby girls, but they were conjoined,” said Dell, a lilt of shock still in her voice. “I was in complete disbelief.”

Dell called her midwife, who said she could not help her any further and suggested she go to Northside Hospital. The Dells heeded the advice and walked straight into the emergency room.

“Everyone was confused as to why I was there,” said Dell, who was 17 weeks pregnant at the time. “I wasn’t bleeding, or in pain, or in labor, but I told them I really needed help. I didn’t have a doctor.”

They were referred to an obstetrician who sat with them in early December and answered many of their questions. The doctor made it clear from the start that, because the girls were conjoined at the heart, there was little to no chance they could be separated and that they would not survive outside the womb.

“I said OK, but deep down I didn’t believe the doctors until my last appointment in January with the pediatric oncologist who performed a fetal echocardiogram and said the OB was correct, my girls could not be separated,” Dell said.

Conjoined twins are a spontaneous occurrence that is rare, but more common with girls. It is not likely that this would happen again in future pregnancies for Dell.

The young couple had a Zoom call with 10 doctors who agreed the babies should be delivered at 32 weeks. Delivering them then would not change the outcome for the girls but would be safer for Dell.

“I tried to prepare myself for delivery day,” Dell said. “I had conversations with doctors about all the possible scenarios. The doctors said the girls might live just minutes, maybe hours, or days. I was nervous and scared.”

Amelia and Elhora Dell were born Feb. 29 — rare babies born on the rarest day, Leap Day — at 7:37 a.m.

The girls never opened their eyes or cried, but they had a heartbeat. Their faces were not identical. Amelia looked much like big brother Dallas and Elhora’s nose was a bit squished from pressing against her sister in the womb. Both girls had dark hair like their mother.

They were connected from their chests to the top of their pelvises, otherwise perfect, said Dell. There were 20 tiny fingers and 20 tiny toes.

Dell was holding her babies when they died at 8:23 a.m.

“They were wrapped like a burrito in a hospital blanket, then, on top of that, a blanket I brought that was pink with white rainbows,” Dell said. “They weren’t in any pain, and they did not suffer. They just looked like they were asleep.”

Sadness has come in waves since losing the girls.

“It can be hard to see all the little babies,” Dell said. “At the same time, I see my sister’s baby boy who was born weeks apart from the girls and imagine what they’d be doing, and though it’s sometimes painful, I’m grateful for him and for the way he reminds me of my girls.”

Desperate to find an outlet for her grief, an idea struck her one evening.

“I turned to Matt and told him I need to paint,” said Dell, who took lots of art classes in college.

She purchased a watercolor kit and began posting her paintings, just for fun, on Instagram. She was encouraged when, after posting a painting of orange slices, someone asked if they could pay her for her art. Encouraged, she kept painting and created an Etsy shop called Petal & Paint.

“My sales have really taken off,” Dell said. “I even sent a painting to Napa, California. I can’t believe it. Painting is an outlet, a distraction, something that taps into my creative side and makes me happy.

“It’s helping me heal.”

Her most popular items are the bookmarks that feature birth month flowers. Two sample bookmarks on her Etsy page feature violets, February’s flower, one with the name Amelia, the other Elhora.

To shop Petal & Paint:

www.etsy.com/shop/petalandpaintstudio/?etsrc=sdt

Move-In Day Mafia

Originally Published by the Atlanta Journal-Constitution

It all began with a message from God — then again, that’s how everything begins for TeeJ Mercer.

God is the reason Mercer moved from Los Angeles, her home of 25 years, to Atlanta. He’s the one who gave her the idea for HBCU Bingo, a game that went viral and provided college students with more than $1 million in cash and prizes. And God is the architect behind Move-In Day Mafia, an organization that helps students transition into their new college homes.

Mercer, an author and speaker, worked in Hollywood for 25 years as a television producer and Emmy-award winning editor. She’s best known for flashy eyewear, an extension of her loud and proud personality, and playfully holds the title of “world’s greatest hugger.” She loved her life and career in L.A., but when she felt God tell her to move to Atlanta, though unsure of his purpose, she listened.

Then she worried that the big guy upstairs might have made a mistake.

“I arrived at the height of the pandemic,” said Mercer, 51. “The city shut down just four days after I got here, and I said, ‘Oh, Lord Jesus, this was not the right timing.’ I’m an extrovert and I was thrown here, can’t go out or make friends; it was a horrible first week. But I’m a woman of faith. I quieted my spirit and God reminded me that I was driven by divine design. He reminded me that I’m meant to bring joy and he’d show me the way.”

Mercer’s first act in Atlanta was to bring joy to families. She saw parents struggling to balance work and homeschooling, so she launched “Storytime with Auntie TeeJ” on her YouTube Channel. Her goal was to give parents a break while she read books to their “little crumb snatchers.”

“I massacred ‘Fox in Socks.’ It was hilarious,” Mercer said.

Like most, Mercer followed the news during the lockdown and was saddened by a story about canceled graduations.

“There were virtual ceremonies, but no parties or celebrations after those kids had worked so hard,” she said. “I asked God what I could do to help those graduates celebrate.”

Mercer’s family had a small get-together during the lockdown and played bingo. The game lit a spark for Mercer. She put her producer skills to work and created HBCU Bingo on her YouTube page.

“I stayed up until 3 a.m. building the back end and thought I might wake up to 15 registrations, but there were 100,” Mercer said. “I made a deal with God; I asked him to show me how to make $100,000 for these kids and I’d know I wasn’t crazy.”

HBCU Bingo received $60,000 in donated cash and prizes within three weeks and $1 million by the four-week mark. The students would receive $2,000 in prizes just for playing. The game was played every Saturday in June 2020 and generated national media attention.

When one participant, a former foster child, was interviewed by a news station, Mercer listened as the girl described the day she was dropped off at college. Her social worker pulled up to the curb, she said, and drove off with a wave. The girl had no help as she moved into her dorm.

“That struck me,” Mercer said. “I’d never considered this problem before. Being a storyteller, my mind created a narrative, an image of one side of a room with a family doting on their freshman and decorating the walls, while a lonely young person stood on the other side of the room with nothing but a suitcase.”

And with that, another mission to bring joy was born.

In 2022, Mercer created Move-In Day Mafia to help students move into their college dorms. Her focus is on HBCU students who have aged out of foster care, are unhoused or grapple with financial hardships.

“We want to help them navigate this transition, and the only thing we ask in return is that they check in now and then,” Mercer said. “So many of these kids are buried in the circumstances of their birth; 70% of kids in foster care dream of going to college, but only 3% go and 1% graduate. We want to help fix that.”

Mercer promoted Move-In Day Mafia on her social media pages and directly to HBCUs. Her crew moved 13 students into one HBCU in 2022, 31 students into five HBCUs in 2023 and this year assisted 44 students move into 18 HBCUs. These numbers do not include the returning students who are provided with repeat service for all four years of their college experience.

One of this year’s 44 students is a 19-year-old from Inglewood, California, who will go by J.D. to protect his privacy.

J.D. was in foster care until age 5, when his grandmother adopted him. In 2023, he saved enough money to move to Atlanta to attend Clark University in pursuit of a business administration degree.

“It was difficult seeing other kids moving in with the help of their families,” J.D. said. “My room was just a box, sterile, no personality. The walls were white; there was a bed and a TV. I didn’t know any different until I got to school and saw the others.”

J.D. stayed on campus over the summer after his freshman year to work as a school tour guide. As he prepared for his sophomore year, he heard about Move-In Day Mafia.

“I was staying in the same building and only had to move upstairs, but I was still alone like last year and would be grateful for any help I could get, anything at all,” J.D. said.

J.D. was selected after completing an application and interview process. He was elated to collaborate with designers to pick out décor for his room — a foreign but wonderful experience. He chose orange bedding, records for his walls and was gifted a one-of-a-kind drawing of his beloved superheroes, Batman and Spiderman. One of his favorite details is a quote by Kobe Bryant on his dresser that reads, “The job is not finished.”

Move-In Day Mafia also gave J.D. an exhaustive questionnaire requesting his preferred products, from snacks to toiletries to cleaning supplies, and they stocked his space to the brim.

“My room makes me so happy,” J.D. said. “Moving in was such a great experience and having the Mafia help was like having family with me for the day. To see people really invested in me, wanting me to thrive — I’m so grateful.”

The move-ins are filmed because Mercer, ever the producer, has considered how a show about the makeovers could lead to great exposure and funding. It costs about $3,800 per student each year. They raised $150,000 last year, and while numbers for 2024 aren’t finalized yet, Mercer said monthly giving and sponsors are a necessity.

“We’ve been so fortunate to have multibillion-dollar companies help us — Amazon, Best Buy, Samsung, Home Depot, Cisco. It’s been an amazing journey, and I pray they will stay with us,” she said. “We need support from corporations as well as individuals who are willing to give $20 a month — it would make a huge difference as we grow.”

Mercer has a vivid memory from 15 years ago. She told God she wanted to travel, hug a bunch of people, and surprise them. Unsure of what God would do with that, she shrugged her shoulders and trusted he would figure it out. She recently realized that prayer was answered.

“I’m ‘Auntie TeeJ’ and I’m on God’s payroll, hugging kids and planning surprises,” she said. “My purpose is to bring joy — that’s my job — and I move when God tells me to move. Move-In Day Mafia is nothing but miracles in motion. I know God will keep showing up because he does it every time. I’ve got the receipts.”

Saved by "Amazing Grace," Josh Reid is Devoted to Saving Others

Originally Published in the Atlanta Journal-Constitution

He calls himself Josh “Amazing” Reid. His life was saved by what he calls amazing grace not once but twice, and now, as a phlebotomy collection specialist for the American Red Cross, he’s devoted to saving the lives of others.

One of his greatest dreams began when he was just 4. That’s how old he was when his father taught him how to play basketball. He was a natural and couldn’t get enough of the game, the feel of the ball in his hand, the echo it created on the court, the strategy — he was hooked. He played at the MLK Jr. Recreation and Aquatic Center through his youth, and continued playing at Benjamin Banneker High School in College Park. In 1998 he transferred from a junior college to Georgia College & State University on a basketball scholarship. His first season as a point guard for the Bobcats was fantastic. He hoped his college years would be successful enough to propel him into a professional basketball career.

But that dream was extinguished on May 6, 1999.

The school semester ended, and Reid was making the trek from Milledgeville back home to Atlanta, his roommate along for the ride in his passenger seat. They were on U.S. 441, just 20 minutes into their drive, when a pickup truck slammed into them head-on.

Reid lost consciousness. When he came to, he saw a steering wheel covered in his blood. His seat belt had slashed his neck open. He followed the sound of screaming and looked right to see his friend with a broken arm and wrist, and a leg stuck beneath the dashboard. Reid felt no pain, just shock as he realized the accident was real and not a nightmare. When he tried to open his door, he looked down to find his right leg, unmoving and shattered.

“At that moment I knew I was about to die,” said Reid, 47, of Lawrenceville.

Reid was rushed to a hospital and into surgery upon his arrival. He received blood transfusions and, unfortunately, the surgeons cut him open in the wrong place while inserting rods and screws into his femur, which was broken in six places, causing intense nerve damage that Reid suffered from the moment he came out of anesthesia.

He stayed in the hospital for a week, then started a new life, one that required 18 to 25 pain pills a day just to survive.

“My relationship with God went from believing in him to expecting him to come through for whatever my heart desired,” said Reid. “Chronic pain was my baseline, but I expected God to make the sun shine in every other aspect. I felt he owed me.”

Reid sat on the bench his junior year to support his team and played infrequently during his senior season. The pain was so terrible he’d have to ice his leg all through the night every time he played.

“That’s the reason I didn’t finish my school psychology degree,” said Reid. “I wasn’t sleeping, so I wasn’t getting up and going to classes. I’d earned an associate degree in junior college and that would be it for me.”

Reid worked in the South Fulton school system as a paraprofessional and substitute teacher for seven years. He worked at a Red Cross warehouse during the summer and learned about a phlebotomist position in 2007. He applied and got the job.

“I was still in a bad place, struggling with severe pain and swelling, but I felt like this was the right job for me,” said Reid. “My dreams were ripped apart in that accident, but my life was saved. Maybe this was how I could return the favor.”

Reid missed work some days because his leg swelled so much that he couldn’t reach down to put on a sock. Fed up with the pain, he nearly put an end to his life in 2015.

“I had the gun to my head, and I cried and cried and cried myself to sleep,” said Reid. “When I saw the gun in my bed the next morning, I called for my sister to come get it and asked her to help me find a counselor.”

Reid did get counseling, as well as a hip replacement.

“I was born again after that surgery,” said Reid. “The nerve damage was gone. The swelling was gone. I could live my life again. I can put on my socks without any pain, something I will never take for granted. I have amazing grace in my life and reassurance of why I want to live and why I’m here. It’s amazing just to wake up every day.”

Reid no longer plays basketball because he can’t run or jump, but he does play golf and loves it nearly as much. He met his fiancée, Shamocka Bolton, through work and together they hope to create a nonprofit that serves first responders.

Reid is in his 17th year with the Red Cross. Every day donors share their often-harrowing stories with him about why they give blood, reigniting Reid’s passion for the job, as well as his desire to donate. He’s given 93 units of his A positive stock so far, more than 11 gallons, his way of thanking the donors who gave for him.

“God has shown me it’s a blessing to be a blessing,” said Reid. “Life really is amazing.”

Family Tragedy Leads to 25 Years of Service and Pinnacle Accomplishment

Originally Published in the Atlanta Journal-Constitution

The Imperial Potentate of Shriners International is the highest position one can attain in the fraternal order that numbers 200,000 people across nine countries, and Buford resident Richard Burke achieved that pinnacle in a ceremony in Reno, Nevada, last month. It’s hard to believe that 22 years ago he barely knew what a Shriner was until the organization’s philanthropic efforts lifted up his family in their darkest hour of need.

In March 2002, Burke’s wife Judy was babysitting their granddaughters, Bailey, 2, and Leah, almost 1, at their new, sprawling dream home on Lake Lanier.

Preparing to give the girls a morning bath, Judy placed Leah in the empty bathtub, then left the room to retrieve Bailey. While on her way, Judy answered her ringing phone. She was away for maybe a minute when she returned to a horrific scene. Baby Leah had flipped a lever and scalding hot water was furiously streaming onto her small, bright red body. Judy pulled her granddaughter from the bathtub, rushed her to the kitchen sink and placed her beneath running cold water. She dialed 911 and pleaded with them to hurry as Leah slipped into unconsciousness.

Leah was life-flighted to the Grady Trauma Center where a doctor recommended she be transferred to Shriners Children’s Ohio.

“The doctor said he had interned at Shriners Children’s and if it were his child or grandchild, that’s where he’d want them to be,” said Burke. “We told the doctor we’d do anything she needed and that we had insurance. The doctor said Shriner’s doesn’t take insurance. I said, ‘Well, we have some money,’ and the doctor said Shriner’s doesn’t take payments either. I was baffled.”

Shriners Children’s sent a helicopter to transport Leah to Ohio, but the prognosis wasn’t good. She had second degree burns on 80% of her body from her neck down. On March 17, two days shy of her first birthday, Leah died in her mother’s arms.

Throughout Leah’s four days at the hospital, the family was amazed by the support they received. A counselor was always by their side, and men wearing red fezzes were constantly buzzing about, assisting and escorting family members.

“I did not understand charity. I always thought it was something for others, not me, and I certainly didn’t realize what Shriners do,” said Burke. “It was hard to equate quality care to free care, but we found out that Shriners Children’s is the very best care. After Leah passed, I wanted to serve. I wanted to give back, and I wanted to be a Shriner. When I left the hospital, I said if they’d give me a bucket and a fez, I’d go collect money immediately. They said my first step would be to become a Mason.”

When the grief-stricken family returned to Georgia, Burke got a referral to a local Masonic Lodge. Invited by a friend, he joined a meeting and then attended some dinners. He focused for a year on what he calls his “degree work,” learning about freemasonry.

Freemasonry evolved from the stonemasons and cathedral builders of the Middle Ages. In the 17th and 18th centuries, freemasonry adopted the rites of ancient religious orders and of chivalric brotherhoods, and they founded the first Grand Lodge in 1717. The fraternity is the largest and oldest organization for men in the world, outside of religious organizations.

After witnessing Shriners, who all began as Masons, in action, Burke was not surprised to learn that the guiding principles are integrity, friendship, respect and service. Masons hold themselves and each other to high moral standards. And while there are special handshakes and rituals known only to members, Burke said he has yet to uncover any deep secrets, despite lore that suggests otherwise.

“Masons don’t hold the keys to the world or anything — at least they haven’t told me,” Burke quipped.

Masons meet monthly to discuss how they can help the community and how they can serve other masons, their widows and their children. Once Burke became a Mason, he immediately became a Shriner. All Shriners are Masons, but not all Masons are Shriners. The latter focuses on fundraising for Shriners Hospitals for Children, of which there are 22 across the country.

When he started as a Shriner, Burke was working 70 hours a week as chief information officer at Financial Operations Networks, but every Friday and Saturday he spent about five hours a day on the street collecting money. He continued for nearly seven years.

“I never saw myself in that role, wearing a fez with cars zooming past me,” said Burke. “But I started seeing many of the same donors. People would pull up and tell me their stories, tell me how Shriners helped their children and grandchildren. It felt good.”

Around 2009, Burke became an officer on the board of directors at his local shrine temple, and he kept advancing, serving on the board of directors for Shriners International and Shriners Children’s for 10 years.

“Rich is a guy who is always there for everyone,” said his brother Jim Burke, 74, who joined the lodge two years ago. “He’s busy as can be, working so hard for Shriners, but he still makes time to drive over an hour to my house to help me and calls every day to check in because I’m fighting some health issues. I’m very proud of the man he is … I wish our parents could be here to see him now, Imperial Potentate. They’d be extremely proud of his dedication, without a doubt.”

This summer Burke was elected Imperial Potentate, prompting him to reduce his work schedule to 10 hours a week or less. As Imperial Potentate he serves as president and chief executive officer of Shriners International and chairman of the board of directors of Shriners Children’s, the fraternity’s official philanthropy. It is an unpaid position and requires Richard and Judy to travel the world about 330 days of the year. While Richard fulfills his role, Judy will fulfill hers as First Lady of the Shriners.

“It’s absolutely a partnership with me and Judy,” said Burke of his wife of 32 years with whom he shares three children. “She works as hard as I do. She meets with ladies and educates them on how the Shrine runs, how they can help the organization. She’s also leading the First Lady’s Project.”

Her project, On Angels’ Wings, serves to educate people on burn awareness, burn treatment and, most of all, burn prevention. It is, she decided, the best way to honor Leah.

“When Richard started this journey, we decided we would tell the story of our granddaughter and let everything we do highlight her and everything she and we went through at Shriners Children’s,” said Judy. “They took us under their wing and helped us through our tragedy, and we will always be so thankful.”

The Burkes now have eight grandchildren. A couple years after Leah died, her sister Kylie was born, bearing a strong resemblance to Leah.

Occasionally the Burkes allow themselves to wonder what Leah would be like today at 22 years of age. Would she be in college? Would she have the same long dark hair and big brown eyes as her sister Kylie? It’s painful to wonder too much.

It’s even more painful to think about the tragic accident that changed their family forever. Richard and Judy have rarely spoken about it over the past decade, but they know this year will be different as they travel the world, educating people about Shriners and burn awareness. The story will always be difficult to recount, but like everything they’ve done for Shriners over the past 21 years, it’s not about them. It’s all for Leah.

Win the Day: A Tribute to Ethan Richardson

Originally Published in the Atlanta Journal-Constitution

“Win the day” is the motto Ethan Richardson’s family adopted earlier this year as Ethan battled cancer. Those same three words were emblazoned on the chests of 60 young men on Aug. 10 at Burnt Hickory Park in Dallas. They gathered to celebrate their friend, who died in April, through one of the things he loved most: lacrosse.

Ethan grew up in Acworth, the middle child of Shelby and Judy Richardson. He was an outdoorsy child who loved to hike and kayak. He was known for his easygoing nature and happy spirit, as well as an ability to handle adversity well. He also was the family dog whisperer, his bed the one both childhood dogs preferred.

Ethan, extroverted from his earliest days, began playing lacrosse in the first grade because that’s what his friends were doing. His zest for the sport was a slow burn, but he was a devotee by the time he got to North Paulding High, playing all four years as a long-stick midfielder.

“His senior year, they lost in the playoffs after nearly beating a team that was much better than them,” said Shelby Richardson, Ethan’s father. “Ethan went to a knee at the end, and he was crying. That moment was impactful. It summarized how much he cared.”

Ethan went on to play lacrosse at Birmingham Southern College for four years and graduated in May 2023. He then moved to Kennesaw, not far from his parents. He had a job in construction, and also coached youth lacrosse. Ethan often was with friends, hosting backyard bonfires and watch parties for UFC fights.

“You can measure people’s priorities by how they spend their time,” Shelby said. “Ethan was always spending time with the people he loved.”

Ethan began complaining of back and shoulder pain in January. An MRI showed inflammation of the rotator cuff, a typical affliction for an athlete. But over the next couple of weeks, the 23-year-old lost 10 pounds and only felt worse. His parents took him to see a chiropractor friend for an adjustment, and the chiropractor’s wife, an emergency room nurse, suggested they take Ethan to the ER.

“His white blood cell count was high, and the doctors could tell from scans that there was internal bleeding somewhere,” Shelby said. “It was that day, February 3, that we learned Ethan was full of cancer. Eighty percent of his liver was covered in it; it was on his spleen, his lungs, and there was a baseball-sized mass by his heart.”

Ethan was diagnosed with extragonadal choriocarcinoma. It’s testicular cancer that doesn’t originate in the testicles. Doctors said that when Ethan was forming in his mother’s womb, the cells likely were left in his chest cavity and, for reasons unknown, a switch flipped and they began to grow. This diagnosis affects 1 in 5 million and is treatable if caught in time. Ethan’s was not.

“Ethan was terrified at first,” Shelby said. “But, interestingly, that first night in the hospital, he said to Judy, ‘I’m too young to die, but you know, Mom, I’ve had a really good life.’”

Though the prognosis was bleak, the Richardsons did nothing but focus on the fight and pray for a win, taking the crisis day by day. Ethan was scheduled for six rounds of chemotherapy. Each time he had chemo, his lungs would fill with fluid, and he would have to be intubated and put on a ventilator.

“Still, we were getting good news from the oncologist,” Shelby said. “The chemo was working, she said, and the tumor markers were decreasing rapidly. But we only made it through two rounds of the chemo.”

On April 8, the oncologist took Shelby and Judy into a private room at Wellstar Kennestone Hospital. She told them that Ethan, their free-spirited son with the unquenchable zeal for life, was not going to make it.

“She said she and Ethan’s many other doctors had taken a step back to assess the situation and realized they were crossing the oath of do no harm,” Shelby said. “More treatment would only prolong his misery.”

The Richardsons returned to Ethan’s room to tell him his fight was over. Because he was ventilated, they’d been communicating back and forth with him through the remote control, typing words into the search bar on Netflix. After digesting his parent’s message for about 30 seconds, Ethan typed three words: “Let’s go home.”

Shelby had promised Ethan that he wouldn’t let him die in the hospital, but the oncologist said it wouldn’t be possible to move him. Ethan, a 6-foot-1 man who still resembled the little boy who brought turtles and lizards into the house, accepted that answer and made another request. He typed “let’s go” on the search bar and nodded toward the ventilator. He wanted it removed.

Doctors said it might take Ethan days to pass once he was taken off the ventilator, but his heart rate began to plummet as he blew kisses to friends and family surrounding his bed.

“I was in disbelief,” Shelby said. “The last thing I remember is looking at him and he was winking at me. It was like he didn’t want us to be sad. That was Ethan.”

Ethan died just 10 minutes after being taken off the ventilator.

The Richardsons have seen Ethan’s friends regularly over the past few months and recently received a call from one of them, Zack Schramm.

“Ethan and I had been friends so long, it’s hard to remember when our friendship began. He’s always there in my memories,” said Schramm, 23, who ran through the woods and across many lacrosse fields with Ethan when they were children. “It was surreal when I found out about E’s cancer. When I’d go visit him and he was at his weakest and worst, I’d still leave thinking he’d get through it.”

Schramm, who battled testicular cancer four years ago, said it still feels surreal that Ethan is gone. He wanted to honor his friend in a way that he would have loved. He told Shelby that he and some others were organizing an afternoon of lacrosse called Ethan Celebration Game. Schramm said he needed nothing from the Richardsons but their presence at the event.

The sweltering heat on Aug. 10 was no match for the enthusiasm of the crowd that gathered to honor Ethan. Sixty young men — one who flew in from Wyoming, another from Texas, many more who drove from Alabama and elsewhere in Georgia — stretched down the sidelines in full lacrosse gear. Most of them were former teammates of Ethan’s from North Paulding High and Birmingham Southern.

Before they took the field, shots of Tito’s were raised, and the letter “E” echoed across the field and into the bleachers, where a throng of loved ones joined the call to the heavens.

Shelby and Judy — wearing matching yellow “Win the Day” shirts with an image of Ethan beneath the words, his arms flung wide, ready for a hug — exchanged smiles, and wiped away tears as they watched the game. It was the perfect tribute for their son, a mix of the things he loved most — the outdoors, lacrosse, his friends and family and, yes, even Tito’s.

“Ethan didn’t know he would die at 23 years old,” Shelby said. “But if you knew you would, you’d live your life like Ethan.”

warrior mom

Originally Published in the Atlanta Journal-Constitution

While Mandie Moore is focused on navigating a terrifying diagnosis for not one but both of her sons, she is also thinking about her future and how she can serve other families through their own heartbreaking challenges.

Life was wonderfully typical until about four years ago. Moore and Devin, her husband of nearly 16 years, were living in Roswell, raising their two sons Max and Chance. They were active in their neighborhood, where the kids had play dates, climbed trees, went to preschool, then elementary school and rode the bus home each day.

Both boys were diagnosed with autism at young ages.

“Neither of them presented in the stereotypical way,” said Moore, 42. “They were both verbal, super social, and would make eye contact, but Max presented with aggression and irritability, while Chance had cognitive delays.”

Max’s behavioral issues intensified as he got older and the Moores decided to move from their three-story home to a ranch in February 2020 for safety concerns. They were oblivious to how necessary a single level home would be in mere months.

The pandemic hit right after their move. With an abundance of time at home, the family often took walks down the quiet streets of their new neighborhood.

“Max was fine during those walks until after a month or two, then he’d have to sit down because his legs were killing him, he was overheated, sweaty and exhausted,” said Moore. “He had no endurance anymore. We knew that wasn’t good.”

The Moores took Max to a neurologist who did genetic testing and discovered he may be a carrier of muscular dystrophy. He was diagnosed with epilepsy in the spring and by fall he was vomiting often, gaining weight rapidly, and craving salty food at night.

Around 1 a.m. on New Year’s Day of 2021, Max hemorrhaged and vomited excessive amounts of blood before seizing and losing consciousness in Moore’s arms. She was about to start CPR on her child just as EMS arrived.

Max went straight into surgery upon arriving at the hospital. He had two bleeding peptic ulcers where his stomach meets his esophagus. Doctors said the ulcers were not typical for children. Max stayed in the PICU (pediatric intensive care unit) for a month, his first hospital stay ever, and during that time was diagnosed with ROHHAD, a rare diagnosis that stands for a combination of symptoms: rapid-onset obesity with hypothalamic dysregulation, hypoventilation, and autonomic dysregulation. The disorder affects 1 in 58 million children. Since it is so rare and difficult to diagnose, many kids die due to respiratory or cardiac issues before being diagnosed.

While there is no cure for the diagnosis and it is life limiting, experimental treatments like IVIG infusions, intravenous medicine that mimics human antibodies, have helped Max. At 12 years old he has lost much of the 100 pounds he gained, has restored his energy levels greatly and doesn’t require the motorized wheelchair he once relied on. Like most kids with ROHHAD, Max did require a tracheostomy to create an airway to help him breathe.

Soon after Max’s diagnosis was confirmed with finality in 2022, his younger brother Chance, 7 at the time, started to show symptoms of heat intolerance and weight gain. By June 2023, he was also diagnosed with ROHHAD and had a subsequent tracheostomy.

“We were very angry,” said Moore. “I think what bothered us most was Chance saw it coming. It was really hard with Max, every bit of it, but to have your other child see his brother dying and know the same is coming for him — it’s like standing in front of a train, knowing it’s going to hit you.”

Fortunately, the boys are able to receive comprehensive care at Children’s Healthcare of Atlanta, unlike many ROHHAD patients who have to travel state to state to see all the necessary specialists.

Moore, who was a full-time nurse practitioner, left her job to care for her boys full time.

“We had so many hospital stays, it was just too hard, and it was also so difficult because I worked in the ICU and every time I heard “code,” the trauma I’d endured with my boys came rushing back,” said Moore. “It was just too much.”

Now that she has adjusted to the new rhythm in her life, Moore has decided to pursue another master’s degree, this one in licensed clinical social work. She’d like to work with families and kids who have experienced medical trauma, or possibly in hospice or palliative care.

“I would really love to give back to Children’s, because they’re the reason my kids are still here,” said Moore. “Max nearly died multiple times. We had even started planning his funeral. The reason I got through it was because of the palliative care team and the social worker. The way they kept me afloat and held my hand so I could be there for Max, so I could be the mother I wanted to be, wow. I just don’t think mentally I could’ve made it without them.”

Moore is a member of a ROHHAD support group on Facebook that has around 200 members. The information shared among parents is immensely helpful, but also very heavy.

“I see posts about people losing their children and after each child passed, I wondered what am I going to do when my whole world goes away,” said Moore, her voice shaking. “I will never survive both of my children not being here if I don’t have a purpose. Helping others is my opportunity to find purpose, to find a sliver of positive amid something so horrible. I want to help others stay afloat.”

Moore will be in school for three semesters. As she prepares for her next professional venture, she’s savoring every moment with her sons and living with intention.

“We all want our kids to grow up and have the brightest future, but any future can change in a second,” said Moore. “Nothing is guaranteed for anyone, not just terminal kids. Live every day to make memories. Bank them, store them, don’t take them for granted. Those memories will stay with us forever.”

Teacher Inspires Community by Walking in 5K After Catastrophic Car Accident

Originally Published in the Atlanta Journal-Constitution

When Ryan Woodworth crossed the Run the Rails 5k finish line in Buford on May 18, a crowd cheered and applauded for the beloved teacher and coach, a man who is lucky to be alive. After surviving a terrible car accident just months ago, Ryan is determined to regain the physical abilities he lost. Playing with his kids is at the top of that list.

The accident happened on a Saturday morning, Feb. 3. Ryan and his daughter Catherine, 2, who was strapped into her car seat behind the driver’s seat, had just left their house in downtown Buford to drive to Home Depot to pick up furniture pads. Just minutes from home, a truck ran a red light and plowed into the passenger side of the car. Ryan remembers barely anything from the collision.

“I didn’t know I had been in a car accident,” said Ryan, 32. “I was in and out, I don’t recall feeling any pain. All I remember is hearing Catherine crying and I wanted to console her.”

Just around the corner, Cassie Woodworth, Ryan’s college sweetheart and wife of nearly six years, received a crash SOS text alert with a GPS location, showing where Ryan had been in an accident.

“I didn’t even know the phone had that feature,” said Cassie, also 32. “I was so confused, then Ryan’s parents called me because they received the message, too.”

Cassie put their son Griffin, 4, in a stroller and rushed out the door to run to the scene. Just 200 yards from home, a paramedic called to tell her Ryan had been taken to one hospital and Catherine to another.

“I didn’t know if they were OK, I just had to get to them as fast as I could,” said Cassie, the emotion of the memory quivering in her voice.

Catherine was taken to Children’s Healthcare of Atlanta-Scottish Rite Hospital. Cassie arrived to find her little girl visibly shaken, but with only minor bruises. When Catherine was released, family took Catherine and Griffin so Cassie could get to Northside Hospital Gwinnett to be with Ryan.

“He had casts on everything, his right leg, his right arm, his left arm, a neck brace, his head was wrapped, and he had an eye patch,” said Cassie. “He had 12 broken bones and a nasty cut on his face, but he was awake, thankfully.”

Shortly after Cassie arrived, Ryan was transferred to Grady Memorial Hospital. He experienced a stroke during the ambulance ride, leaving his entire left side paralyzed.

While doctors were unsure of how severe Ryan’s stroke was, Cassie battled thoughts of worst-case scenarios.

It took time for Ryan to understand the extent of his injuries. He was at Grady for 19 days and, true to the man he’s always been, was a source of strength for Cassie, even in his darkest hour.

“He had such a positive attitude throughout it all, trying to make me feel better, trying to put his parents at ease,” said Cassie.

Ryan was transferred to Shepherd Center, an Atlanta hospital that specializes in medical treatment, research and rehabilitation for people with various injuries, including strokes, on Feb. 22.

He worked on skills like standing, walking, rolling over onto his side, and sitting up on the edge of the bed. The progress was steady, but being away from home may have been Ryan’s greatest struggle.

“The first time Cassie brought the kids to visit, I didn’t look like their dad,” said Ryan. “I had casts everywhere, my beard had grown out, and I couldn’t pick them up. It was challenging. But seeing them gave me motivation to keep up the fight. My goal was and is to be with them, take care of them, run after them in the yard. My son always asks to race, and he asks me to chase him. I want my answer to always be yes.”

Ryan returned home April 9. He will continue outpatient therapy for an undetermined amount of time and, though he is able to walk for short stretches, is primarily using a wheelchair for now.

When a former student’s parent reached out and offered to push him in the Run the Rails 5k, Ryan instantly said yes.

“I was so appreciative and thought it was a great idea,” said Ryan. “That’s a huge annual race in Buford and I wanted the opportunity to get out there and thank the community that was a huge support for our family throughout this ordeal.”

Ryan chose to walk the last 400 feet to the finish line, and a crowd from his school, Buford Academy, was on the sidelines with signs, cheers, tears and arms flung open for hugs.

“It was very emotional to see so many familiar faces – parents, former student, co-workers,” said Ryan. “It was humbling to see some of the people who’d been praying for me. My room at Shepherd was wallpapered with cards and pictures from the students at Buford Academy and truly, the love we received helped so much. It kept us going.”

Ryan still has finish lines to cross, and some days are more difficult than others, but he is motivated to meet his goals and his perspective on life is clear.

“Cherish every moment and pour into others,” said Ryan. “That’s all I want to do, I want to live my life for others through coaching, teaching and being the best husband and father I can be.”

90-Year-Old Runner Inspires Generations

Originally Published in the Atlanta Journal-Constitution

A mile from The Atlanta Journal-Constitution Peachtree Road Race finish line, at the corner of Peachtree and 10th streets, Jere Allen will search for Faye, his wife of 64 years. Surrounded by their family, Faye will be searching the crowd of runners for him. She’ll wave with relief when she spots him, thankful her 90-year-old husband is OK, then she’ll bask in the joy of the occasion, of this family tradition that Jere unwittingly began 45 years ago.

Jere and his older brother Marion grew up thick as thieves. When Marion died from a sudden heart attack in 1976, Jere was devastated over the loss of his only sibling.

“We were close, and it was so awful, such a shock,” said Jere, of Birmingham, Alabama. “I realized when he died that the same could happen to me. I was 43 years old and that’s when I started running.”

Jere took to it immediately. Easy and enjoyable, running became a part of his daily routine, one that, aside from a few exceptions, he has not missed since January 1977.

Jere was a pilot in the Air Force for three years after graduating from Auburn University and became a pastor in his late 20s. In 1979, he took a job with the Southern Baptist Convention, and he, Faye, and their three children, Bill, Lorena and Dawn, moved from Birmingham to Atlanta. By then, Jere had a few 5Ks and 10Ks under his belt and decided to register for his first AJC Peachtree Road Race. He remembers it as a great run with maybe 20,000 runners — a huge contrast to the 50th anniversary race in 2019, he said, which had three times as many participants.

Jere made his best time ever at age 55 when he completed the PRR in 48 minutes. He’s battled prostate and vocal cord cancers over the years, neither of which kept him from running the annual race. He and Faye moved twice after leaving Atlanta, first to Washington, then back to Birmingham, and still made sure to return to Atlanta for the race every July 4th.

“I’ve always said the Peachtree is not as much a race as it is an event,” said Jere. “They’ve made some course changes over the years, all of them good, and it’s always a memorable experience to be part of such a large group, a community of people taking exercise seriously. And now not only am I running, but I’ve got my family running with me.”

Bill Allen, 57, joined his father in the race for the first time in 1996 when he was 29.

“I’d watched dad since I was 13 or so and. for all those years after, wanted to join him,” said Bill, a Peachtree Corners resident. “I didn’t realize until I had kids of my own that it was a sacrifice for him that first year. He was fast, and he slowed down for me.”

Like his father, running came easy to Bill, and it’s something he continued after his first AJC Peachtree Road Race. For nearly 20 years he’s run five miles three mornings a week with the same two friends.

Jere’s daily runs are solo and vary in distance throughout his neighborhood, from one to three miles, and 6.2 miles once a week. He still preaches once a month at a retirement home, so he often rehearses his sermons in his head as he runs. He’s also an avid golfer and sometimes opts to play 18 holes in his mind.

He recently fell while on a long run and required five stitches in his hand.

“I know my age is a factor,” said Jere. “My family has a lot of nurses and they have me eating more protein and making sure I’m as prepared as I can be for the Peachtree.”

Along with Bill, whose full name is William Jere Allen Jr., Bill’s son Tripp (William Jere Allen III, 19) runs the AJC Peachtree Road Race. He began at age 10, the minimum age requirement, and continues each year. Following Jere’s lead is important to the Allen men.

“We do it to honor him,” said Bill. “He’s the guy who taught me everything I know, and I want to be like him. He’s an awesome dad and the most generous, kindest man. He’s my inspiration in all ways.”

Tripp feels the same, as is evident in a college essay he wrote in 2022. He described his first AJC Peachtree Road Race, his excitement at the start line, followed by a relentless downpour throughout the 6.2 miles. As he ran, miserable with the weather conditions, he looked next to him to find his grandfather, his hero, smiling at him.

“It doesn’t get better than this,” Jere said to his grandson, and the two crossed the finish line side by side.

Tripp wrote that he was unhappy with his race time in 2022. He walked a mile back on the course to join his family, who were still cheering on the sidelines, waiting for his grandfather’s wave of runners to go by. When Jere passed, however, Tripp didn’t think he looked well, so, despite his fatigue and frustration with his own finish time, he jumped onto the course and ran alongside his grandfather for the final stretch. When he told his grandfather his shoelaces were untied, Jere responded “I don’t care, I’m not stopping.”

“This reminded me of the determination he taught me,” wrote Tripp. “I now see the race as less about the time I run and instead the time I get to spend with him and my dad.”

Since that race, it has become a tradition that a family member joins Jere for the final mile.

The three Allen men, along with Bill’s daughters, Jere’s sons-in-law and a cousin, run in various waves of the race, but they all know where to go when they finish.

The corner of Peachtree and 10th streets near Colony Square has always been their meeting spot. They gather for cheers, hugs and photos, then the entire crew heads to Bill’s house for a barbecue.

“Our big celebrations are always together — Thanksgiving, Christmas, Easter, and we always know we’ll be together in Atlanta on the Fourth of July,” said Faye, 87. “It’s just wonderful.”

Jere is often tired the day after the race and takes his time to recover, but he has no plans to slow down.

“It’s always been exciting, but, of course, now that he’s 90, it makes me a little nervous,” said Faye. “I wonder if he’ll ever be able to give it up. I’m afraid he won’t, but he’s something of a hero in our community.”

Jere humbly laughs at the use of “hero” to describe him.

“Or something of an idiot,” he quips. “It’s kind of stupid, but I’ll have to be pushed to quit. If I’m determined to do something, I’m going to do it. I’ll go as long as I can. It gets harder every year, it takes me a couple hours to finish now, and I know there will come a point when I have to say that’s it. I don’t look forward to it, but it’ll surely come.”

Jere is delighted by the way his family has latched on to the AJC Peachtree Road Race, grateful they want to continue his legacy.

“I never imagined the race would grow to be what it is for our family, with so many of them running,” said Jere. “And, boy, how special to see them rooting for me, joining me for that last mile to be sure I don’t fall. The older I get, the longer they have to wait, but they’re always there, watching out for me.”

Viral Embarrassment Led to Sobriety for David Hobbs

Originally Published in the Atlanta Journal-Constitution

When a photo of David Hobbs arrested in a Captain America costume went viral, it could have been the most embarrassing moment of his life, but Hobbs says that was the moment his life was saved. The night of the incident, Sept. 11, 2019, is the last time Hobbs used drugs and now, nearly five years sober, he uses his testimony to save others.

Hobbs, 41, grew up in Clarksdale, Mississippi. His father was an alcoholic and Hobbs was an addict by age 15.

“I smoked weed at 13, then came the drinking, then, when I was 16 a doctor prescribed pain medication after I got hurt in a skateboarding accident,” said Hobbs, of Lawrenceville. “I learned quickly if you mix Lortab with alcohol, all your insecurities disappear.”

Hobbs tried cocaine at age 18 and had a couple bad car accidents that led to more pain medication prescriptions. Next came methamphetamines.

“I’d stop using meth here and there for maybe six months or a year, but I could never quit the narcotics,” said Hobbs. “I took 18 to 36 every day. There may be a time when I went a day or two without them, but only if I couldn’t get it. If I had $20 in my pocket, I’d buy narcotics.”

Hobbs was unable to keep a job. He and his father started two successful tree removal businesses and ran both into the ground. The second time ended catastrophically. While under the influence, Hobbs operated the truck incorrectly and ruined it, rendering them unable to work. He quickly ran out of money and was homeless for 30 days, sleeping in a tent alongside the highway.

“Addiction truly takes everything away from you,” said Hobbs.

On the day of infamy in 2019, Hobbs woke at 3 a.m., wondering why his girlfriend was not yet home from a babysitting job. He debated going back to sleep, but instead took an assortment of narcotics and methamphetamines and decided he’d go look for her. As he headed out of the house, which belonged to his girlfriend’s brother, Hobbs found a box, looked inside, and discovered a Captain America costume. He also found a Santa Claus costume. He put on Captain America and told his girlfriend’s brother to dress up as Santa Claus and join him for the walk.

Hobbs paced in the driveway, waiting for his partner in crime for 45 minutes. He never appeared, but something more surprising than Santa came into focus. Standing in the middle of the road was a man with a shotgun.

“I walked up to him to see what was wrong,” said Hobbs. “By the time I was within five feet of him, he drew the gun on me. I put my hands in the air and suddenly remembered I was in the costume.”

The gun-wielding man accused Hobbs of attempting to break into his shed. He ordered him to get on the ground and hollered at his wife to call 911.

The police officers got a laugh at the Captain America get-up. Hobbs had no idea one officer took a photo and posted it to his personal Facebook page, not until the next day when his picture was on local and network news stations, and even ESPN.

“The inmates had been calling me ‘captain’ and I was confused till I saw that photo on TV,” said Hobbs. “Later on, so many people asked why I didn’t sue the police department, but how could I be mad after what came from it?”

An old friend from his hometown, Trey Lewis, happened to see Hobbs on the news. Lewis is the owner and founder of Good Landing Recovery, a faith-based treatment center located in Dacula. He not only recognized Hobbs but wanted to help him.

“He reached out and offered me a spot at Good Landing,” said Hobbs. “When I met the judge to discuss my next step, I asked him to let me go to treatment. He allowed me to go straight to Good Landing, two-and-a-half states over. Trey would’ve never found me if not for that whole ordeal. That was a God moment.”

In his mind, Hobbs said he’d give rehab 15 days, then head back to Mississippi. However, when he reached 15 days, his plan rerouted.

“I started to think there might be something to this sobriety thing,” said Hobbs. “I thought I’d give it another 30 days, then I hit the 45-day mark to find the grass was greener, and life felt like pink clouds, everything awesome and brand new.”

Hobbs completed a 90-day program at Good Landing. He skipped holidays at home, even when he had the freedom to go, because he wanted to protect his sobriety. He missed his family, his mother and grandmother most of all, but he decided to make Georgia his home, knowing the ghosts of his past could haunt him back in Mississippi.

After graduating from Good Landing, Hobbs was hired as a staff member and now helps others find their way to sobriety.

With his life on track, Hobbs plans to continue his career in recovery. He also hopes to buy a home, get married and have children. He is proud of his growth and especially grateful that his grandmother saw him turn his life around before she died.

“I was always Grandma’s boy,” said Hobbs. “She saw me transition from a nice, well-mannered young man into someone who didn’t love others or care about anything. It broke her heart and she tried so hard to help me.

“A tear ran down her face when she saw that the well-mannered boy she loved so much is now a man of character and good morals. She got to see that I have become a man of God. That was the proudest moment of my life.”

Zumba Instructor with Down Syndrome Dreams Big

Originally Published in the Atlanta Journal-Constitution

Elisha McKenzie, a 21-year-old woman with Down syndrome, uses a vision board to manifest her dreams and it’s proving to be a useful tool. Her dream of being a licensed Zumba instructor became a reality in the fall of 2023. She has been teaching once a month since January and hopes to teach more classes at more locations soon.

Elisha found Zumba by mistake. Six years ago, she and her mom, Jacqueline, went to LA Fitness to take a Pilates class, but learned it had been canceled. Zumba was next on the schedule, so they decided to go for it.

“Elisha had the time of her life, she was loving it,” said Jacqueline. “Ever since then, it’s been all about Zumba. We started going about five times a week, sometimes twice a day.”

Elisha reaches for her mom’s hand as she speaks.

“Mom is a good partner to do it with. I love spending time with her, she’s the best mom ever.”

Instructors often pull Elisha up to the front of the class, which she enjoys because she loves the spotlight.

When Elisha expressed the desire to become an instructor, she and her parents attended a Zoom meeting about the certification process and decided to move forward. Elisha attended a one-day certification training that lasted 10 hours.

“The instructor showed movements and gave us different ideas about how to teach,” said Elisha. “It was fun. Some parts were kind of hard, but I was pulled to the front a couple times because I knew the moves. I love being in front of the class.”

Elisha has attended Gigi’s Playhouse in Roswell, a nationwide nonprofit that provides children and adults who have Down syndrome with tutoring, recreational classes and life skills, for years. When the director heard Elisha had been certified as a Zumba instructor, he suggested she teach classes there.

“I cried before my first class because I was nervous,” said Elisha. “My mom and sister were there with me, and they said it was OK to be nervous. They told me to just focus on the class and I encouraged myself by saying ‘I’m enough right now in this moment. I can do this.’ And I rocked it.”

Elisha usually teaches a children’s class immediately followed by an adult class. She is eager to add more classes to her schedule and hopes she can branch out to local gyms, like the LA Fitness in Johns Creek.

As pictured on her vision board, she also hopes to attend a Zumba convention in Orlando, Florida, and wants to create a YouTube channel to share her Zumba videos and to promote mental health and fitness. She also wants to post videos from her public speaking engagements.

Elisha is a youth ambassador and speaker for the Supported Decision-Making Project, which is promoted by the Georgia Advocacy Office. SDM is an alternative to guardianship for people with disabilities. It allows individuals to retain their right to make decisions for themselves with the support of trusted ones. Elisha trained for a year to speak on the subject and has since been invited to speak at Emory University and in Washington, D.C.

Elisha, who lives with her mom and her father, Richard, in Suwanee, and spends lots of time with her older sister, Eliana, and younger sister, Elizabeth, also hopes to make friends of her own. She has a small group she meets with on Wednesdays through Gwinnett Church, but she’d love to have a friend with Down syndrome.

“I want to go out and grab coffee, or go to Chick-fil-A,” said Elisha. “It would be nice if we both had Down syndrome. It’s nice to have things in common. My sisters have friends and I’d like to have some, too.”

At the center of her vision board is a pretty, blue house with white trim. Elisha points to the photo and lights up with excitement.

“Richard and I were talking about the future one day, saying maybe we’d build on an attachment for Elisha, or maybe create a space just for her in the basement,” said Jacqueline, smiling at the memory. “Elisha overheard and piped up, ‘I’m not living with you guys.’”

Elisha nods with affirmation and begins to describe her dream house.

“I look up houses on Zillow because I want to live on my own one day,” said Elisha. “I want to live in Johns Creek and I’m thinking about how I want to decorate it. I love red, it’s my favorite color, and I want people to come have dinner with me.”

When making decisions and setting goals, Jacqueline always tells the family to consider what’s positive and possible. Elisha has adopted that motto, and, by the looks of her vision board, her possibilities are endless.

Dream Come True for Military Spouse

Originally Published in the Atlanta Journal-Constitution

Shelley Williams had plans to graduate from the University of North Georgia, then she fell in love with a soldier. She left school early to get married and move away, but never lost her desire to claim UNG as her alma mater. This spring, her husband of 25 years made her dream come true.

Shelley was born and raised in Stone Mountain and graduated from Providence Christian Academy in 1996. She spent her entire life wanting to attend the University of Georgia, until a friend invited her to visit UNG.

“I told her I’d go, but I wouldn’t like it,” said Shelley, 45. “But I fell in love with it immediately. Coming from a small private school, I think UGA would have been overwhelming for me. The size of UNG was appealing, and it was just a beautiful place. I got there and knew it was where I was meant to be.”

During the fall of her freshman year, Shelley, who was on the dance team at UNG, was walking with a friend around the drill field when a friend introduced her to a boy named Jason Williams. The two sparked a friendship that became romantic after a couple months.

“I think we knew early on that we were it for each other,” said Shelley. “Once we started dating, we got serious pretty quick. He’s a serious guy anyway, so I never had to wonder if he was the type to settle down. We’re both people who make up our minds quickly.”

Shelley was just 19 years old when Jason proposed at Black Mountain Lodge and turned 20 before they married on March 13, 1999.

Scheduling the wedding was an arduous task. Shelley’s father wanted to be sure she would still get her degree since they’d be getting married during her junior year. Jason was stationed in Fort Carson, Colorado, so Shelley promised her father she’d transfer schools once she moved and she would still graduate.

They were told Jason would have his first deployment soon after the wedding, but, as Shelley quickly learned, change is constant in the Army. Jason set out for Bosnia, his first deployment, a week after their one-year wedding anniversary.

Shelley kept her promise to her dad. She graduated from the University of Colorado at Colorado Springs with a psychology degree in 2001.

“I’m glad I did it, but it wasn’t really special to me,” said Shelley. “It would’ve meant more if my degree had been from UNG.”

After a miscarriage and fertility issues, Shelley became pregnant with triplets in 2003. Their daughters, Abbey Grace, who lived just one day, Anna Lee, and Emma Kate were born at 24 weeks gestation. Their youngest daughter, Caroline, was born in 2006, while Jason was deployed in Iraq. He watched her be born over Skype and met her we he returned home on her 6-month birthday.

Over the past 25 years, the Williamses have moved 11 times, and they currently live in Fort Liberty (formerly Fort Bragg), North Carolina. Jason’s shortest deployment was four months and his longest was a year.

“The Army has been a really good life for us,” said Shelley. “I grew up in the same house my entire life, had never moved before, and didn’t know anything about the military. UNG was good about preparing me. When a civilian dates someone in the Corps of Cadets, we sit in on ceremonies and learn about Army traditions. And, like anything, you learn as you go and deal with things as they come. Jason has been good about teaching about the Army and sharing experiences with me. I’m completely bought in. It’s an all-encompassing lifestyle, a family business. This is our life, and this is what we do. We just love it.”

Jason enlisted out of high school 30 years ago and commissioned as a lieutenant 26 years ago. His specialty is field artillery and he’s also a paratrooper. He was promoted to Brigadier General for the 82nd Airborne Division in May.

Throughout his career, Jason has not lost sight of the sacrifices Shelley has made for him, and he took notice that, despite their shared years and affinity for UNG, Shelley won’t refer to herself as a UNG alumna. Jason was determined to change that.

“For all she did at school and all she has given me and my career in the years since, Shelley is an alumna of UNG and I wanted her to be recognized,” said Jason.

He reached out to UNG President Mike Shannon and asked if it would be possible to grant Shelley alumna status. Shannon said absolutely.

During an alumni weekend in April, the Williamses were invited to a conference where a revamped drill field would be revealed. While standing around in a large group, Shannon said he needed to recognize some people who attended the school but didn’t graduate because they followed their soldier to go on active duty.

“I was shocked, but I knew he was talking about me,” said Shelley. “Turns out, there were a few of us there with similar stories. Dr. Shannon talked about our commitment to serving with our husbands and because we’d left for that reason, he granted us all alumna status. It was so special, so sweet of Jason. Getting my degree there, back where we met, felt like a full circle moment.”

Shelley has a certificate she can’t wait to frame and now proudly declares herself an alumna of UNG.

“Shelley could have chosen any path, and she chose me,” said Jason. “From the very beginning she has given me and our marriage everything. It has never been lost on me that she didn’t have to do any of that, and everything I have achieved is in large measure because of her.”

WWII Vet Turns 100 and Reflects on a Life Well-Lived

Originally Published in the Atlanta Journal-Constitution

Photo by Arvin Temkar

During World War II, as Eugene Russo lay in foxholes, he would pray for God to let him live just one more day. At 100 years old, that is still his prayer.

“I think I’ll get to be 101, maybe even 102,” said Russo, pointing to the sky. “Whenever this guy is ready for me. A doctor in New York once told me I’d live to see the high 90s because I’ve been so healthy. I tried to call him not long ago to tell him my age but couldn’t get him. I think he died.”

Russo was born in the Bronx into a family of four siblings. His mother died when he was 2, and the family, including his father, two brothers and two sisters, moved to Irving, New York. When he was 19, he and his brothers were drafted into the Army.

“I don’t remember being scared. Hard to be scared of anything at 19.”

The trio of brothers trained at Camp Upton in Long Island, then splintered into different directions for special training. Russo spent 1943 at Camp Bowie in Brownwood, Texas, then took the U.S.S. Vernon from Massachusetts to England, arriving in July, mere weeks after D-Day and the Normandy invasion.

“I seen a lot of action then,” said Russo. “They put us on landing craft tanks to cross the Channel and as soon as we landed on Omaha Beach, the Germans were firing at us from their pillboxes [bunkers], so we knocked them out and kept going forward.”

Russo traveled to France and marched beneath the Eiffel Tower on his way to the front lines in Germany.

“I remember a lot, you know. I seen some terrible things,” said Russo. “In the middle of the night, a friend and his crew got wiped out by a battery. Seven guys, just like that. I lucked out. We kept seeing airplanes after that. I looked up and saw two English planes, spitfires, in a dogfight against a German plane, right there above me. I seen airplane bombers spot us and turn around to attack, shooting guns with shrapnel that shot out right in front of my eyes. I remember crossing the Rhine River and seeing a church standing there in the middle of nothing, completely untouched.”

Russo describes an attack when his crew was surrounded by German tanks. His sergeant yelled for everyone to get down, every man for himself. As he jumped into a foxhole, Russo heard a loud noise behind him. American fighter planes had swooped down and wiped out the German tanks.

“We got out fast, marching orders, and saw German soldiers and body parts lying all around,” said Russo. “Pure shock.”

World War II ended on May 7, 1945, and on May 9, Russo was accidentally shot in the kneecap by an American soldier.

“I didn’t feel no pain,” said Russo. “They shipped me to a hospital in Frankfurt with two military police officers who never left my side. A German doctor operated on my knee. I was coming out of anesthesia when he put the bullet in my hand as a souvenir.”

After a monthlong stay in the hospital, Russo returned home, reunited with both of his brothers.

He tried to work for General Motors and passed the physical, but when an examiner saw the scar on Russo’s knee, he said he couldn’t hire him. He feared Russo would get injured on the job and require compensation.

So he went to work as a brick layer and stone mason. He had friends who were plumbers and electricians, so he learned those trades from them and began building houses, too, a career he continued for 60 years.

He never married or had children, but always lived with family, first one brother and then the other until they died. Since 2013, he has lived with his nephew Nat Galassi and his wife Olga, both 85, in Lawrenceville.

Nat grew up idolizing his “Uncle U.” He lived with him as a teenager and followed in his footsteps professionally.

“Uncle U was in my wedding party and over the years he used to ask Olga if she’d take care of him one day when he’s old and gray,” said Nat. “She always said yes and now it finally happened. I think he chose Olga because she’s such a good cook.”

The three share a ranch-style home with four bedrooms and an oversized kitchen.

Russo attributes his longevity to healthy living. It helps that he likes to cook — eggplant, fish, lasagna and Italian braciole are some of his specialties.

“I take one pill for blood pressure and that’s it, not even a multivitamin. If you eat good food, you don’t need that stuff. I eat fruits, vegetables and no sugar or salt. I cut those out when I was 70 or 80.”

Russo smiles wide and points to a mouthful of teeth, then lifts his World War II veteran hat to reveal a headful of white hair. All original, he said. He began bodybuilding in his teens and continued until his late 70s.

A healthy outlook on life has been a contributing factor, too.

“He has huge confidence, always wants to be the best, always wants to win,” said Olga, who plays multiple games of Scrabble with Uncle U each day. “He’s always optimistic and gets up even if he’s feeling sick, never complaining or talking negatively. He also likes his vodka every day. Vodka tonics, martinis, bellinis, whichever, and wine for dinner. A drink a day keeps him going.”

Russo nods in agreement, then deadpans.

“You know my secret? Don’t die.”

Russo drives himself to the Collins Hill Branch library most days. He reads multiple newspapers for a couple hours to stay informed on current events, then drives to the grocery store or home.

On Sunday nights they host big Italian meals for the entire family. The Galassi’s have four children, 11 grandchildren, and one great-grandchild.

“They all love their Uncle U,” said Olga. “He’s always there with a card or a gift, always loving them. It’s like our kids and grandkids are his, too. He got his own family at the end of his life when he moved in with us. And he’ll be buried with us, too, one day. Our names are already on the wall.”

When asked what wisdom he’d impart to younger generations, Russo is quick to answer.

“Go to school, learn,” said Russo. “And not just the technology stuff — pen and paper. I don’t like technology, and I don’t like AI. I can’t keep up with it all, they’re going too fast. Everyone used to talk to one another, but now there’s a computer in everyone’s hands wherever you go. It’s awful. Too fast of living is no good. Why not slow it down a little?”

Russo is grateful for the life he’s led and especially proud to be a veteran. When he wears his veteran hat, he is often the recipient of kind gestures from strangers. His groceries have been paid for anonymously at Kroger, breakfasts at Waffle House are often treated, and the family’s dinner was covered at a restaurant one day by a good Samaritan who came over and hugged him.

“And I had filet mignon!” said Russo. “People are too good to me.”

Russo is a lifelong Catholic. He leads the prayer before every meal, including when the kids and grandkids come over, all hands clasped to create a big circle. Nat often finds Uncle U in his bedroom, both morning and night, praying on his knees.

“God’s my buddy,” said Russo. “I talk to him all the time. He’s given me this life and I’m thankful. I’ve had a good time.”

Writer’s Note

It was an honor to interview Eugene Russo as well as Nat and Olga Galassi. What a special experience it was to hear Eugene’s memories from World War II and hear how passionate he is about America and our soldiers.

I learned so much from this 100-year-old man and from his 85-year-old niece and nephew. I encourage everyone to sit with the seniors in their life, listen to their stories, write down their memories, maybe even record them. They are the keepers of a rich history, and their stories deserve to be heard.

Special thanks to Gina Maguire, Russo’s great-niece, for writing the Atlanta Journal-Constitution about her uncle. Because of you, so many people will learn about this special man you’ve loved your whole life.

Mother and Daughter Choose Hope Amid Battle with Mystery Disease

Originally Published in the Atlanta Journal-Constitution

It was March 15, 2023, when Merrilee Heflin’s daughter Rachel Blackman called her for help. Blackman’s husband was at work, her kids were at school, and she was stuck on a bathroom bench, suddenly unable to walk. That was the beginning of a year marked by lost abilities, including walking, writing, and speaking. As they search to find a cure for Blackman, the mother and daughter share unwavering hope and love.

Blackman, 40, has been known as “Sunshine” since she was a little girl. There’s a story Heflin tells about her daughter at age 9. She was riding on a lawn mower with her grandfather when her foot got sucked in by the machine, cutting off half her heel. Blackman was helicoptered to a hospital where she stayed for 19 days and endured several surgeries.

“You’d expect a child to be a mess over something like that, but Rachel was sitting up smiling,” said Heflin, 70. “The nurses loved her bright spirit. She was just sunshine.”

Blackman’s sunny disposition continued to shine through the years. She was on the shy side, but her mom said she blossomed socially when she went to college. She attended Auburn University where she joined the Delta Zeta sorority and served as the recruitment chair. She also earned a spot as a Tigerette, a student host for the athletic department.

“She knew nothing about football but knew it was a big deal at Auburn, so she studied with flashcards to become a Tigerette,” said Heflin. “We got to go down onto the field and watch her do her part. She made us so proud. She’s always been a leader.”

Blackman studied special education and went on to teach for five years before being recruited for an international sales job. She married Brad Blackman, principal at Dickerson Middle School, in 2011, and they have two sons, Peyton, 11, and Cameron, 7. The family lives on a quiet cul-de-sac in Marietta.

In 2017, near the end of Blackman’s time in sales, she noticed a change in her speech. She was talking so fast it was hard for people to understand, but she couldn’t control it. She returned to teaching part-time, but the school lost that position after a year and Blackman was unable to secure a position elsewhere because of her hard-to-understand speech. She was thrilled when she was hired as a tutor.

“She got all prepared for the lessons and was so excited to meet with the kid that first day,” said Heflin. “But the second day, the assistant principal said they couldn’t keep her because the child couldn’t understand her. It was heartbreaking.”

Hearing this memory, Blackman, seated next to her mother, dabs her eyes with Kleenex.

Blackman visited her first of seven neurologists in 2017. Her MRI was normal, but blood work showed an irregularity in an antibody associated with autoimmune disease. Doctors suggested speech therapy and intravenous immunoglobin infusion therapy (IVIG), which can help fight an array of diseases. Blackman had IVIG every six weeks for five days in a row for two years, but it made no significant change. She also began to struggle with balance and spastic movements in her arms and legs, which led to physical and occupational therapies.

In 2021, Blackman met with an Emory neurologist who suggested she might have Functional Neurological Disorder (FND), which was seconded by a doctor at the Mayo Clinic. FND is described as a problem with the functioning of the nervous system and how the brain and body send and receive signals, affecting speech and movement.

Desperate to keep life as normal as possible for her sons, Blackman fought to continue routines, like reading to them each night. Sadly, that came to an end when words became harder and harder to get out.

While Blackman has been pursuing answers for years, her condition has rapidly progressed since March 2023 when she found herself unable to move in the bathroom.

“I live 11 minutes away, unless I get that darn red light, then it’s 12,” said Heflin, who, along with her husband and Blackman’s father, Larry, raced to Blackman’s house that morning. “Brad came home, and we took her to the emergency room. She had COVID and was hospitalized for three days. She was walking and driving on March 14, and came home from the hospital with a walker, which she’s relied on ever since.”

Over the past year, Blackman has lost 100 pounds without trying and endured a few attacks that caused her blood pressure to skyrocket and her body to sweat and spasm. Her ability to speak was also significantly compromised. She’s completely sound in mind, which makes the communication aspect especially frustrating. Earlier this year, a neurologist suggested Blackman might have Stiff Person Syndrome, an autoimmune neurological disorder that causes muscle stiffness and sporadic spasms that worsen over time.

While neither the symptoms for FND nor Stiff Person’s Syndrome, both extremely rare with limited research available, seem to be an exact match, Blackman is being treated for both and has hope that she will recover some, if not all, of her abilities. Doctors have said it is possible

“‘Keeping the hope alive’ is our mantra,” said Heflin, as Blackman nods. “Her speech has improved some recently and we hope that’s just the beginning.”

Friends launched a GoFundMe page to assist with Blackman’s medical expenses. They have eclipsed more than two-fifths of their $50,000 goal. In addition to that, Blackman’s supporters formed “Team Rachel Turtles.” They wear pink and green silicone wristbands (a nod to Blackman’s beloved Delta Zeta sorority) and are devoted to praying for and encouraging Blackman as she fights her battle.

Blackman is a present mom, giving everything she can to her young sons. Every day when they get off the bus, they burst through the door and run to hug their mother. That alone, said Heflin, keeps Blackman motivated to fight.

“Rachel is a very loving mom and has always found great joy in everything her boys do,” said Heflin. “She’s volunteered in their classes and their church events and rooted for them at games. Now she has to use a wheelchair for games, but she’ll do whatever she has to.

“I’ve always been so proud to be Rachel’s mom. People have always said how beautiful she is, but I tell them she’s even more beautiful on the inside. She has a great spirit and has always walked close to God.”

Asked if she still has faith in God, Blackman slowly twists her fist and extends her thumb upward.

“What mother’s heart wouldn’t break watching this, but I know God has a plan,” said Heflin.

Heflin is the contact person for doctor’s offices and she and Larry, both retired, take their daughter to her appointments.

“We’ll go as far as she’s willing to go,” said Heflin. “Rachel wants to be whole, to be a fully engaged participant in the boys’ lives. We’ll do whatever it takes, no stone will be left unturned. I live to make sure of that.”

Rachel Blackman’s GoFundMe

From Motherhood to Grandmotherhood, Midwife and Doula Share it All

Originally Published in the Atlanta Journal-Constitution

Photo contributed by Elsa Hall

Mother’s Day promises to be a special occasion for two Atlanta moms whose teen pregnancies launched them on similar paths raising big families, starting their own businesses and helping others start their own families.

Carson Ragan was 16 when she became pregnant and married a boy she’d been with since the seventh grade. People offered to pay for her to have an abortion, others suggested she put her baby up for adoption. A home for pregnant girls was also recommended. Ragan refused all of it.

“I wanted to keep the baby, and I also insisted that I wouldn’t be a statistic,” said Ragan, 47. “I knew I wanted to contribute to my community somehow, someday, and I knew I didn’t want to depend on a man or the government.”

She and her husband moved to Marietta to live with her mother, and Ragan welcomed daughter Macauly at age 17. The following year, her second child arrived three months early, which led to a three-month stay in the ICU for newborns. Ragan was fascinated by the nurses caring for the moms and their babies. A spark ignited and Ragan knew she wanted to be a nurse in perinatal care. She enrolled at Columbus State University and graduated at age 21 with three children under 4. She went on to have a fourth child, and now has what she calls a bonus daughter with her second husband, so five kids in all.

Maegan Hall grew up in Virginia and also got married at 16. She had her first child, daughter Brianna, at age 18, and, like Ragan, was adamant that she wouldn’t fall victim to the teen mom stereotypes.

“My senior quote was, ‘I will not become a statistic,’” said Hall, 43.

Hall went on to have four more children and started a photography business specializing in taking pictures of families, children and births.

“In 2004, I was at a church event and another pregnant mom asked what I did for work. I said I photographed moms and took care of them when they gave birth, and she said ‘Oh! You’re a doula!’ I had never even heard of that name, but it felt right. Yes, I was a doula.”

Hall got certified, transitioned her business into Maegan Hall Photography + Doula Care and moved to Atlanta. As a doula, she provides emotional, physical and educational support to mothers throughout their pregnancies, during labor and after.

Ragan and Hall first met at a birth in 2006 at Northside Hospital Cherokee. Although they couldn’t have imagined the ways their lives mirrored one another or foreseen the bond of friendship they would eventually forge, they both made a striking impression on each other.

“Doulas and nurses don’t generally interact a bunch, but a nurse can really make or break a birth and affect the satisfaction of the parents,” said Hall. “I remember watching Carson, thinking ‘I really like her.’”

Ragan felt the same about Hall.

“She stood out to me,” said Ragan. “I just remember thinking she was giving the patient such good memories. Plus, she was a breath of fresh air. Back then there was some negativity between staff and doulas, just a bit of a power struggle, and Maegan came in with wonderful energy and was such a delight.”

Hall didn’t work at Ragan’s hospital often, but when she did, she’d look for her, hoping they’d be paired together. A couple years later, she heard that Ragan was attending midwifery school and

started her own midwifery practice in 2019.

“I had to reach out,” said Hall. “I called and told her that the model of care she wanted to provide was perfect for my type of clientele.”

The women went to lunch — which wasn’t easy to coordinate because, as they say, one of them is always on call or catching a baby — and they were baffled to discover how similar their lives were.

“We reconnected so quickly on both a personal and professional level,” said Ragan. “We were both moms of five children who’d been pregnant as teens and divorced, both of us, after exactly 17.5 years of marriage. We were building businesses of our own and shared the same dream: to love and support women and their families.”

Ragan’s business, OB2me, offers concierge obstetric care, which takes a holistic approach to childbirth and facilitates different types of births including unmedicated and water birth.

In addition to serving as a doula, Hall provides photography and videography of the labor and delivery, helping to ensure the experience is both empowering and memorable for her clients.

The two friends have worked more than 50 births together, two of which were particularly special.

“When my daughter Brianna got pregnant, I reached out to Carson, because Brianna already knew Carson (would) be the only one to touch my grandchildren,” said Hall with a laugh. “Shortly after, Carson called and said, ‘Guess what?’ Her oldest daughter was pregnant, too.”

Hall and Ragan introduced their daughters and encouraged them to forge a friendship, sharing from experience how wonderful it is to have a friend in the same phase as life, and how special it would be for their babies to grow up together. Just like their mothers, Brianna and Macauly clicked.

For Brianna’s December delivery, Hall was her doula videographer, but she hired another doula in case she needed to focus more on being a mom. Similarly, when Macauly had her baby just weeks later, Carson had a backup midwife.

Watching her daughter give birth was a full circle moment for Hall.

“I kept thinking, ‘I made it. I thrived and now I have a daughter who is thriving. I didn’t break, I didn’t fail. My daughter is OK, and now I get the beautiful gift of witnessing my daughter have a daughter,’” said Hall. “I was crushed with gratitude.”

Ragan echoes her friend’s sentiments and adds that she’s grateful she could watch Hall become a grandmother first.

“The whole thing was surreal,” said Ragan. “To see her emotionally connected in this birth, out of her element where she’s always so professional, was emotional and wonderful for me. Then it was my turn.”

Hall relished watching Ragan mothering her daughter as she labored.

“She was so hands-on, braiding hair, tucking in, giving kisses and hugs and cuddles,” said Hall. “When it was determined that Macauly needed a C-section, it was so beautiful to see her show confidence in the decision. We were with Macauly in the operating room and when she met her baby, it was pure bliss.”

Hall and Ragan both welcomed granddaughters, Juniper and Blair, respectively. And their moms have already gotten the babies together for playdates.

Neither Ragan nor Hall will go by “Grandma.” Ragan is called “Tita” and, Hall is considering “Tati,” which is Armenian for grandmother. Tita and Tati, the women burst into laughter when they hear the nearly identical names together.

Among their symmetries, Hall and Ragan share immense pride for what they overcame as teenaged mothers, who they have become as women and business owners, and, most of all, for the families they’ve raised.

“Carson and I have won the lottery of life,” said Hall.

Ragan, of course, wholeheartedly agrees.

Joey Milstein Finds Independence at Annandale Village

Originally published in the Atlanta Journal-Constitution

Photography by Natrice Miller

Joey Milstein loves his independence. He loves to blare Spotify, tidy his room and do laundry. He finds joy in activities like crafts, yoga, and dance class. He greets friends daily with a fist or elbow bump and gives his parents hugs and kisses on the weekends. Known for expressions like, “I’m thankful to be me,” and, “I’m spectacular,” Joey creates a ripple of smiles wherever he goes. When the 24-year-old was born with developmental disabilities, his mother accepted that life wouldn’t look typical for Joey, but she held onto hope that he would still live a meaningful, happy life. She credits Annandale Village for making her dream come true.

A Scary Start

Jed and Shelly Milstein, of New Jersey, were excited to start a family. They started trying in 1997, but soon learned their odds of conceiving on their own were slim. They chose to try in vitro fertilization and harvested 13 eggs, resulting in eight viable embryos. Three were implanted.

“We went to that first ultrasound and there was one heartbeat, two heartbeats, three heartbeats,” said Shelly Milstein. “We were overjoyed.”

Shelly was working full-time as a litigation attorney at a large firm in New Jersey. She knew she would not be able to work throughout the entire pregnancy but didn’t expect to leave at 16 weeks.

“The doctors didn’t even tell me I had to go on bedrest. There was no other option,” said Shelly, whose 5′8″ small frame grew rapidly. “I’d reach for a glass of water just two inches from my hand and couldn’t get it.”

Strong contractions began when she was 29 weeks along. Shelly assumed doctors would stop labor when she arrived at the hospital, but they had other plans. Joey, Lauren and Sam Milstein were born December 13, 1999. Joey and Lauren weighed nearly 3 pounds and Sam was just 2 pounds 2 ounces. All three babies went to the neonatal care unit.

“I wasn’t terrified right away,” said Shelly. “It didn’t all sink in for a while, but there were 100 indications that something wasn’t OK with the boys. There were new issues every day and so many miracles along the way. Someone would have a brain bleed, another would have a stomach issue, another would have a heart issue. It was such a roller coaster. Anything that can go wrong with a pre-term baby went wrong with at least one of my babies. Joey had the most medical issues.”

Joey had a grade 4 brain bleed. The Milsteins were told his motor skills would be affected. He had a series of spinal taps because of fluid accumulating in his head. Ultimately it was determined that the spinal taps weren’t working, so a shunt was put in when Joey was nine weeks old.

The Milsteins brought their trio home on Valentine’s Day 2000, along with breathing monitors and night nurses.

“That time is such a blur,” said Shelly. “I tried to be meticulous. I kept charts of when they ate, peed, pooped. I pumped milk for all three and our house had a revolving door of friends and family coming to help. We needed an entourage anywhere we went.”

As is common with premature babies, the Milstein triplets had developmental delays. The gap between the boys and Lauren began to widen quickly as she achieved milestones before them, walking and talking up a storm while the boys lagged. Sam was diagnosed with autism as a toddler, while Joey’s diagnosis was more in the gray area — things like cerebral palsy, behavior disorder, autism and intellectual disability have all been tossed around.

For years Joey cried inconsolably and constantly banged his head as a way of coping and communicating. Among other therapies, Joey worked with a behavioral therapist.

“All I wanted for Joey was for him to be able to communicate without so much frustration,” said Shelly. “He got the basics down — walking, talking, using the bathroom, but I was afraid his behavior would hold him back. I dreamed of getting to the point where he wouldn’t bang his head and by late elementary school, he became the poster child for behavior (therapy). He went from being unmanageable to sweet, obedient, and only wanting to please. It was literally life changing.”

Big Moves

In 2012, when Jed had the opportunity to take a new job that would allow for more family time, the Milstein family moved to Marietta.

“The kids were starting the seventh grade, and we chose Marietta specifically because we wanted the best schools for all three of them,” said Shelly.

While Lauren thrived in advanced placement classes, and Sam was enrolled in a full-time program to improve his communication, social and adaptive skills, Joey attended Walton High School where he was in mainstream classrooms part of the day and special education classes the other. Joey played the euphonium in the school band and worked at the school coffee shop throughout high school.

“Joey was very popular in school,” said Shelly. “He went to prom every year, people always called out ‘Joey!’ when they’d see him around. He was like the mayor.”

After high school, as Joey watched his classmates head off to college, he was excited to take a leap. In the fall of 2020, he landed at Annandale Village, where Sam was already living.

“Sam and Joey are very different, they’ve never been in classes or anything together, so if it’s right for Sam, who is minimally verbal, Joey assumes it’s not right for him,” said Shelly. “But once he got to Annandale and saw it for himself, he realized it was the best of everything.”

An Independent Life

Tucked out of sight in the bustling city of Suwanee, just 30 minutes from the Milstein’s home, is Annandale Village, a nonprofit residential community for individuals with intellectual or developmental disabilities and acquired brain injuries. Annandale was established in 1969 by Dr. Maxwell Berry and his wife Elizabeth, who dreamed of the perfect place for their daughter Libba, who was born with developmental disabilities. A stark contrast to the institutions of that time, Annandale was designed to be a warm home setting that could care for Libba when they no longer could, a place that would give her opportunities to meet her potential.

Today there are approximately 150 villagers spread across the independent and semi-independent living apartments, cottage residences, two assisted living centers and a center for skilled nursing.

Annandale services range from $1,500 to $5,300 a month, based on level of care and support needs. Fees are offset 20% thanks to the philanthropic community, and residents of more than 10 years have access to scholarships. In addition, Medicaid and Medicare are utilized.

Joey lives in a semi-independent apartment. He has his own bedroom and shares a bathroom and kitchenette with his suite mate and buddy, Aidan. Joey has the freedom to walk all over the 55-acre campus, from his house to the dining hall, to the activity center and the walking trails. His days usually begin at Jackson House where he meets with a group for morning meetings and games.

“I love doing crafts, meditation and exercise, and I like having conversations at Jackson House,” said Joey, whose smile is ever-present. “I really love to make my bed, and I do my laundry by myself on Saturdays, and Aidan and I like to listen to music together.”

Joey won the Annandale’s Got Talent show in 2022. He sang “Bad Habits” by Ed Sheeran and dropped the mic at the end of his performance.

“The show was just the best,” said Shelly, who brought friends to cheer Joey on. “It’s so obvious that he’s happy and thriving at Annandale, as is Sam, and that’s all any parent would want for their child. We could continue to try to cobble together ways to meet their various needs, but Annandale provides comprehensive one-stop shopping at a level we simply wouldn’t be able to provide. Living on a campus with their peers allows them to experience and enjoy community in a way they never would if they lived with us. Instead of scavenging for social opportunities, they have built-in friendships.”

Like the Berrys, one of Shelly’s greatest fears was wondering who would take care of Joey and Sam when she and Jed no longer can. Now that their sons are at Annandale, the fear has evaporated.

Annandale offers all levels of care throughout an individual’s lifetime, which means Joey and his brother never have to leave their home or their friends.

“I see my family often,” said Joey. “My mom is really beautiful. She calls me Joe Joe.”

Shelly and Jed take their sons out to lunch most Sundays. Joey prefers Taco Mac because he likes to participate in Brewniversity, sampling different beers and accruing points and prizes.

“They like to be out and about, but they’re always glad to get back home. Annandale is their home, and they love it,” said Shelly. “We’re so relieved and grateful that they will have that for the rest of their lives. We know we won’t be here forever, so we take immense comfort in knowing Annandale will always be here for them and they will be loved, supported, respected and cared for.”

Joey calls his mom at least five times a day. He talks to her about his day, asks about her day, he always says he loves her, and he loves Annandale Village. He often says, “I’m happy that I’m happy,” which is music to Shelly’s ears.

“I’m happy that you’re happy, Joe Joe.”

Kim Airhart Supports Others as She Fights 4th Stage Cancer

originally published in the Atlanta Journal-Constitution

As Kim Airhart battles her own cancer recurrence, she continues to raise funds and awareness for ovarian cancer research and provide support for other women fighting the harrowing disease.

Statistically, patients diagnosed with Stage 4 ovarian cancer have a high rate of recurrence, but Airhart hoped she would be a unicorn. Through her nonprofit, Harts of Teal, she has witnessed many recurrences, but still, she stayed as optimistic as she could. She felt well when she went to her quarterly blood tumor marker check in December, which made her even more shocked to learn her level, which had been 11 since she completed treatment in August 2020, had jumped to 62.

“I knew something was wrong. I had a PET scan after the blood test,” said Airhart, 45, of Fayetteville. “It was clear, so we had to just wait and see what would show up.”

At the end of December, she flew to MD Anderson Cancer Center in Texas, where she learned the cancer was near her liver and diaphragm. Two months later, she felt pain high in her abdomen and had to have fluid drained from the lining around her lungs, known as the pleural space. It was enough to fill two soda cans. She had fluid drained again just four weeks later.

After her initial diagnosis in February 2020, she underwent a full hysterectomy. Once ovaries are removed, if the cancer returns, it typically goes to the lymphatic system: the liver, lungs, brain, or anywhere in the abdomen.

“It’s on my diaphragm and in my pleural space, almost to my lungs and liver,” said Airhart. “They can’t go get it, it’s too much to take out, so they have to shrink it with chemo.”

On March 11, Airhart began a combo of three drugs for six rounds. It was heartbreaking, said Airhart, when she and Chris, her husband of nearly 17 years, told their five children — Holden, Harrison, Carter, Kate, and Hayes, ages 7 to 15 — that the cancer had returned.

“I didn’t want to scare them, but I also can’t lie to them,” said Airhart. “I can’t tell them I’m going to be OK, but I reiterate that God has a plan and, though we may not understand it, he’ll never leave us. I had the option to do a regiment where I wouldn’t lose my hair again or have bone pain and that’s what I chose. Holden, who’s 7, doesn’t remember the first time. All he knows is Harts of Teal and me taking care of others with cancer, not me having cancer.”

Airhart hosted the first Harts of Teal event, the Harts of Teal 5K and 1 Mile Fun Run, in July 2021, and officially established the nonprofit that August. Though her energy has taken a hit due to treatment, she is currently full steam ahead, planning the 4th annual Harts of Teal 5K for June 8, and continuing outreach in a variety of ways.

“I know this is what I’m supposed to be doing,” said Airhart.

Airhart leads monthly support groups and Zoom calls, as well as monthly dinners for who she calls her “Teal Sisters,” teal being the color of the ovarian cancer ribbon. Harts of Teal has provided 11,500 “Teal for Teachers” lunch totes, which include an information card about all the signs and symptoms of gynecological cancers. Harts of Teal has also sent out over 100 blessing bags, a backpack with a blanket, to women who have recently been diagnosed with ovarian cancer, and they frequently send gifts to women who are hospitalized or experiencing a recurrence. Harts of Teal has also given $30,000 toward ovarian cancer research.

Airhart has spoken at Bible studies, corporate lunch and learns, and recently spoke at a women’s shelter, educating them on ovarian cancer.

“It never fails when I speak to an audience that people say they’ve never heard about the signs and symptoms of ovarian cancer,” said Airhart. “I didn’t know either. I was bloated and constipated and had I known those were symptoms, I could have been diagnosed earlier and been two stages better.”

Airhart has said goodbye to many of her Teal Sisters over the past four years, 10 women just since March 2023.

“I was at a funeral not long ago and couldn’t even cry, I felt so numb,” said Airhart. “It’s very sobering. I may be in and out of treatment the rest of my life, I may not be here in 10 years, we just don’t know. I try not to focus on it, but it’s there every second of the day. Other moms my age talk about future grandkids and I’m afraid I won’t have the chance to be a grandmother. All I can do is lean on God.”

Airhart does think about her future and is hopeful her dreams will be realized.

“I want to further our mission with Harts of Teal,” said Airhart. “I want teal to be as recognized for ovarian cancer as pink is for breast cancer, and I want Harts of Teal to continue beyond me. I hope this is my last treatment, that my cancer doesn’t come back, and that I get to meet my grandbabies. I hope one day there’s a test to detect ovarian cancer in the early stages and no one will have to lose their wives, mothers, grandmothers, and friends.”

To learn more about Harts of Teal or to register for the Harts of Teal 5K, visit www.hartsofteal.org.