Meet People with FA

Donovan

Hi! My name is Donovan, and I live in Yonkers, New York. I was born on October 3, 1996. I have had balance issues since I was a little boy; however, when I was almost 7, my doctors told me that I have Friedreich’s Ataxia. I was a little relieved because I always had more problems walking than my friends so then I knew that I wasn’t weird. They are- but I am not (just kidding). Then my parents showed me a bunch of other kids around the world that had FA also. This was good because I didn’t feel so alone. We attend several conferences each year, and I have some of my best friends at the meetings. We get to hang out while my parents have to go their lectures. It is awesome! It is like a big party!

We live really close to New York City and that is really cool. There are lots of cool things to do in the city like visiting Nintendo World or seeing concerts at Madison Square Gardens. We are also close to the beaches and mountains; so in the summer, I go swimming and sailing and in the winter, I go skiing. I use a special bi-ski that allows me to ski. I have an IEP program at school, which provides me with an aide, PT/OT and adaptive PE. They take away all my physical limitations so that I can be a regular student.

Make-A-Wish granted me my wish of acting in my very own movie as the Silver Ranger. That was so cool! I am now a Make-A-Wish alumni and sit on our Hudson Valley’s committee. My dad is a member of the speaker’s bureau, and I sometimes go with him to share the power of the Wish! http://hudson.wish.org/2008/12/03/donovans-wish/

Having FA is a mixed blessing. Part of me hates it, but part of me thinks it is important, because it has opened opportunities for me. I have great organizations that support me, like MDA, FARA, MAW, We Sing for the World, Garden of Dreams. I have sung with Tony Orlando, watched the Rangers from a Sky box, had Broadway performers sing to me, hung out with Giants and Jets players, and starred in my own movie. There is also our fundraiser program called Team Donovan, which focuses on research funding for FA. People from all over come to compete in the Jarden Westchester Triathlon and be on Team Donovan. It is cool. I focus on things that I can do, and, yes, my parents are always pushing me. But I don’t focus on what I can’t do, after all nobody is good at everything! I am always looking forward to our next adventure, as my life has been one adventure after another!