By Alyce Collins
THIS INSPIRING woman’s degenerative condition was initially brushed off as CLUMSINESS and even though she now relies on walls, furniture and A WALKER just to get around her home she isn’t about to let FRIEDREICH’S ATAXIA stand in the way of her becoming a teacher.
University student Madelyn Frederick (20) from Dallas, USA, was always known as the ‘clumsy’ one in her family, but it was just thought that her constant stumbles and inability to ride a bike was nothing more than a lack of balance.
Madelyn was falling down the stairs multiple times a week, and she started noticing chest pains while running. Doctors diagnosed Madelyn with exercise-induced bronchospasms, however this didn’t explain the fatigue she noticed after walking short distances.
In December 2012, Madelyn was rushed to hospital because her heart rate was at 234 bpm, which led doctors to explore Madelyn’s symptoms further. In March 2013, Madelyn was diagnosed with Friedrich’s Ataxia (FA), a degenerative disease which causes the loss of sensation in arms and legs and can impair speech over time.
By the time of her diagnosis, Madelyn’s condition had deteriorated substantially, leading her to sleep for most of the day, and her muscle spasms caused a great deal of pain. In the years since, Madelyn has gone from being able to walk with minor balance issues, to now having to use a walker around the house and a wheelchair when she goes out.
While studying, Madelyn works at a primary school as becoming a teacher has always been her dream, and although she feared FA would deny her of that, she now refuses to let it define her. The pupils are curious about her condition and her wheelchair, but Madelyn uses that as a teaching opportunity to raise awareness for FA amongst the next generation.
When Madelyn was diagnosed with FA, she feared that her life would be halted and she would never accomplish anything more than brushing her own hair – which she feared would one day become impossible – but she has since gone on to walk across the stage at her school graduation, travelled to Italy and Greece and learned to drive.
“I was always known as the clumsy child in the family, but when I was 13 I hit the genetic jackpot,” said Madelyn.
“I would stumble down the stairs a few times a week and I was never any good at riding a bike, but my parents didn’t think anything of it.
“I started to get chest pains when I ran a mile during PE at school, and I was diagnosed with exercise-induced bronchospasms at first. There were also other small hints at something else being wrong as I was very uncoordinated and got bad fatigue.
“In December 2012, I was rushed to the hospital due to a pulse rate of 234, and that’s what kickstarted my diagnosis process. I was eventually diagnosed with FA in the following March. So, in hindsight, all of the problems I had before my diagnosis were due to FA.
“I had never heard of FA before, so my first thought was whether I would still be able to brush my hair in the future. I had rapidly declined prior to my diagnosis; I was sleeping through the day and I was in severe pain due to muscle spasms and neuropathy. So, I didn’t know how much worse it could get.”
Since her diagnosis six years ago, Madelyn has had to learn to adapt to her limitations, but she hasn’t lost hope that she will accomplish her dream career of becoming a teacher.
Madelyn shares her journey on Instagram and YouTube to raise awareness for Friedrich’s Ataxia because she had never even heard of the condition which transformed her life. She feared that she’d lose all ability before long, but she hopes to show others that FA doesn’t need to stop life in its tracks.
“Six years ago, the biggest monster entered my life and I had no way of defeating it or even the capability of shrinking it. The only thing I could do was figure out how to grow bigger than it. So that’s what I did, and I continue to do every day,” said Madelyn.
“Some days are harder than others, so I have to remember that I have FA, but it doesn’t have me. It has taken me a while to accept and embrace my life now. It may hinder the way that I do things, but I can still do them.
“My walking has definitely progressed since I was first diagnosed. It was barely noticeable back then, but now it’s obvious when I walk. I used to hold on to someone’s arm lightly for stability, but now it’s more like I’m tugging and almost knocking them down.
“My room is upstairs, so when I’m upstairs I don’t use a device, but I rely on walls and furniture to help me. When I’m downstairs, I use a walker because my house is quite open.
“I use my wheelchair whenever I leave my house, mainly to conserve energy and reduce anxiety. Occasionally I don’t use it, for example, if I’m going to eat with friends or going to church because I can walk in and sit down, and I just hold someone’s arm to walk in.
“I like to say that FA makes things harder but not impossible, or I may do things slower than someone else, but I can still do them. The way I see it is that the only limitation is your mind.
“At the school I teach in, the children are very curious about my condition and about the wheelchair. Honesty is the best policy, so I hide nothing. I do have to simplify my description of FA, but I love seeing the innocence and immediate acceptance of children. It’s like they immediately see past the difference.
“I have done many things that I thought were impossible after my diagnosis. I graduated from school and walked across the stage. I have been to Italy and Greece; I became an ambassador for Make A Wish and FARA. Now, I’m studying to pursue my dream career in primary education.
“There’s so much I would like to show through my journey but most of all it’s that life is what you make of it, no matter what your circumstance. Choosing positivity will get you so much further than negativity. A happy, successful, fulfilled life is possible despite my challenges.”
To see more, visit www.instagram.com/madelynfrederick