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 a service dog named Shadow, who helps me with my balance and is also my best friend.  We live really close to New York City, and that is really cool.  There are lots of cool things to do there like visiting Nintendo World or the Games Workshop.  We are also close to the beaches and mountains, so in the summer I go swimming and sometimes 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.  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.  My parents are very active with me; and we get to do a lot of cool fundraiser stuff and attend conferences.  I am one of the MDA Goodwill Ambassadors and was named as A & P’s Ambassador also.  Each year we do a big fundraiser called the Jarden Westchester Triathlon where we raise lots of money for FARA. 

Last year Make-A-Wish granted me my wish of acting in my very own movie as the Silver Ranger.  That was so cool!  My parents are very supportive of me, although they make me do my homework.  We get to do lots of fun things.  Last year we went white water rafting down the Colorado River, and I got be with other families with FA.  I made a lot of friends, and we all got to go camping while on the river.  We travel to southern Virginia each year and visit my mom’s side of the family and then travel to Ocean City, MD to visit my dad’s side.  We are constantly doing things with my family, like this Thanksgiving we all met at Discovery Cove to swim with the dolphins.  My parents tell me that there are clinical trials going on that might lead to a treatment for me and that makes me very happy, although I like who I am - FA and all.

View pictures from Donovan’s Make-A-Wish:  http://web.mac.com/simpson4us/iWeb/Site/Donovan%20MAW2.html