Stephanie’s Story

         In life everyone has a choice; you can either enjoy what God has blessed you with or choose not to see the joy and beauty in every day, even the hard ones. My name is Stephanie and I choose to enjoy what I have been blessed with. That might sound a little cliché to you or even a little too easy, but guess what? It’s true! And one more thing…it is definitely not easy BUT it is always worth it.

        My life is a roller coaster ride for sure; kinda scary and nerve-wracking, exciting and exhilarating all at the same time. You know the feeling that all the best roller coasters give, where you feel torn between wanting to get off as quickly as possible and never wanting the ride to end? That pretty much sums up my life. Actually, it probably sums up everybody’s life. Even in our differences, we can all find common ground. However, each life takes its own twists and turns, and mine? Well, the twists and turns have taken me where I never imagined I’d go….


photo by: Lovely Hannah Photography

Even though I was pretty much always a clumsy kid, nothing really seemed out of the ordinary about me at all. I was just like every little girl that loved dressing up, playing with Barbie’s and dreamed of growing up and getting married, becoming a mom, and living a beautiful, ordinary life. And then when I was 12, I turned into a girl who was anything but ordinary, only I didn’t know it yet.

        In 7th grade, there was a mandatory screening for scoliosis during P.E. and I remember the lady examining me being fully shocked that I didn’t know I had scoliosis. After my parents promptly took me to my pediatrician, which led to visits with a few neurologists, we knew why no one had noticed my curvy spine until it was almost shaped like the letter “S”. There was something a whole lot more serious going on to cause such a quick progression. More tests and doctor’s appointments than I could count finally provided the answer; Charcot-Marie Tooth (CMT). At least, we thought that was the answer until my physical abilities kept declining in a way that wasn’t matching up with CMT. So 10 years, more tests, and more doctors later, the truth came to light, I have Friedreich’s Ataxia.

        Friedreich’s what?? I think that was pretty close to what my parents’ and I said when we heard this new explanation for why I was having so much trouble walking and keeping my balance. I have to admit that I wasn’t at all prepared for learning about the severity of my new reality. A wheelchair, severe loss of coordination, slurred speech, and a shortened life-span were no longer unimaginable but expected. I believe that God spared me the knowledge of my true diagnosis for those ten years because I was not as emotionally able to handle it at 13 as I was at 23. For that, I will always be thankful. Especially because now the future is so much more promising than it was in 1994 for everyone living with FA.

        The hope of a cure for FA is what has drawn me into fundraising and given me the courage to allow anyone to see into the parts of my life that I was once embarrassed and afraid of, parts I tried so hard to ignore and keep hidden. FA has taken so very much from me and I hope that I can be a small part of the efforts working so hard to end this disease, making sure that one day FA will no longer be able to take anything from anyone. I hope that you’ll join with me in the fight against Friedreich’s Ataxia.

        While it has been anything but easy living with FA, I have learned to accept what I cannot change; I love my life and consider myself to be truly blessed. Everyone’s life goes in directions that seem unexpected and even unwanted at times, but we’re all in this life together. Everyone has a disability; some are just more obvious than others.