Adelia  RideATAXIA Philly 2017

Doug Spooner
October 4, 1984 to December 13, 2004

It seems like just the other day I was running around the baseball diamond for little league.  But time passes and things change.  They have changed for me more than most of my peers.  I now use a wheel chair.  I no longer have dreams of playing professional sports.  However, I still think of myself as a normal teenager, if there is such a thing.

My disease keeps me from doing certain things with my friends, but they are reasonable and find ways to include me.  I go to movies with them, even though they may whine about loading my chair into their cars.  We play games and joke around with each other.  They don’t feel sorry for me; they shouldn’t. 

My family and I now have to plan where we go more carefully.  We need to make sure that the places are accessible.  We even had to remodel part of our house recently, so that I can learn to be more independent.    I’m not sure what I want to study in college, but I am somewhat interested in marketing.  It’s not football, but it works for me now.

My disease is called Friedreich’s Ataxia.  It affects the nervous system and gets worse over time.  I prefer not to think of it as a disease, just more as a change in my lifestyle.  To tell the truth, I usually prefer not to think of it at all.  I try to not let it change the things I do and the ways I think.  It does limit the things I am able to do, though.  I am, for the most part, a normal kid.  There is nothing I can do to get rid of my disability, and I don’t plan to let it get me down.


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