Mother and Daughter Choose Hope Amid Battle with Mystery Disease
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.”
