For five years, after her diagnosis with Friedreich’s ataxia (FA), Plano native Madelyn Frederick held a firm grip on denial. When she finally came to terms with the disease, she jumped in with extreme gusto.
“FA is a neuromuscular degenerative genetic disease,” Madelyn said. “Similar to ALS but on a slower progression.”
Her mother, Yvette Frederick, described some of Madelyn’s early symptoms.
“She was always the clumsy kid. In PE she started having chest pains and was diagnosed with exercise induced bronchospasms. Then she started having anxiety, so we had to see a psychiatrist,” the mother said. “If she got a cold it would take forever to get better.”
In 2012, on New Year’s Eve, Madelyn said her chest was hurting so Yvette gave her an over-the-counter heartburn relief medicine. Later that night, Madelyn’s sister alerted her mom that Madelyn was lying on the couch grasping her chest. Madelyn said the pain went from her chest up to her neck and that her heart was racing.
Yvette is a nurse, so she quickly put a pulse oximeter on Madelyn’s finger and was shocked to read her level was 283. Their pediatrician told them to go immediately to the hospital. Once there, she was treated as if she was having a heart attack. The doctors thought she might have a viral infection and was sent home that night.
Over the next three days, her health declined to the point that Madelyn’s father, Brent Frederick, had to carry his daughter into the pediatrician’s office. For the next three weeks, Madelyn underwent multiple tests which ruled out sleep deprivation, vitamin E deficiency, heavy metal poisoning and much more.
Finally, on March 4, while Yvette and Madelyn were driving to a baby shower, they were told she had FA.
Yvette said, “The first thing Madelyn said to me was, ‘I’ll never be able to brush my own hair.’ I said, ‘Yes you will.’ Then it was just crying.”
Later that month, Yvette connected with a mother who also had a daughter with FA. The daughter was a year older than Madelyn, and her disease was more progressed. The mothers and daughters met in person.
“I was in heaven because I met someone who could help navigate what I needed to do,” Yvette said. “We get home and she’s balling in her room. She said, ‘I should have never met her because that’s my future.’”
Meeting this teen, coupled with attending rideATAXIA Dallas where she was surrounded by people with FA, sent Madelyn into full denial.
Her pink wheelchair, festooned with fun lights, sat dormant in the dining room for five years.
Since FA is a degenerative disease, Madelyn’s symptoms increased.
“FA, even though it doesn’t affect you cognitively, it’s much more than just physical. You are constantly going through a stage of grief,” the 21-year-old said. “If you have a spinal cord injury, you’re one and done. With FA it is a constant decline every day. I’m in the grief cycle every single day over something I could do last week. That’s hard.”
When Madelyn was 17 years old, the family was preparing for a family celebration, which included family members visiting from out of town. Yvette insisted Madelyn use the wheelchair due to her low energy levels.
“We went shopping, and I used the chair. I didn’t have to hold on to her. I could go look at all the clothes I wanted to look at,” Madelyn said. “It was freedom. I was hooked.”
After that, she saw possibilities for her future and decided to peek into the FA community. She started by joining a Friedreich’s Ataxia Research Alliance (FARA) virtual teen hangout.
“I committed in January to go to every hangout every month, but I never said a word. I sat back and listened to everyone else talk. After that year, I said, ‘this is incredible.’ I went in headfirst and got very involved with the FA community.”
When she turned 18, she became an FA ambassador, which she continues to do today. She is also an ambassador for MDA and Make-a-Wish.
Additionally, she leads the FA teen hangouts and shares her story on multiple social media platforms.
“I feel like I finally found my purpose,” Madelyn said. “It is so fulfilling to me to be able to connect people who walk the same path. They were walking it alone and had no idea that there was someone else walking the same path.”
The same fundraiser, rideATAXIA Dallas, which sent her barreling to her bed holding tight to her denial, is the one she now dominates as the top fundraiser. Her team, Madelyn’s Tribe, raised $48,000 last year and $58,000 this year.
Brent said he was happily surprised to see Madelyn dive into the effort and give 100% because she had been in denial for so long.
Although she still falls about six times a day, even when using a walker inside her own house. So many routine things are hard for her to do such as standing up, walking, brushing her teeth and making meals. Madelyn said that on a good day, she feels thankful.
She finds strength in her faith.
“My faith flourished once I relinquished my will to the will of God,” she said. “Once I realized I didn’t need to be in control and I didn’t need to be strong, then it all came together, and I became strong in my weakness.”