My name is Harrington River Robicheaux. I live in Toronto, Ontario, Canada, with my mamere', my papere', my grandmaman and grandpapere', and my little sister Honore' Renee', who is six. I am ten.
I have muscular dystrophy. I have had it since I was about four/five years old, and over the years it's gotten worse. I just got my wheelchair last year, and it makes life more difficult, yet on the other hand, it makes it easier, too. My muscles are weak, and I need help doing lots of things: getting dressed, picking up dropped items, and eating.
It's a pain because the type I have is the bad kind: Duchenne's, which strikes only boys, and there's nothing really that can be done to slow the progression. Unfortunately, I'm not expected to live to the age of fifteen; if I do I can consider myself extremely fortunate.
Because I am in a wheelchair, I can't do a lot of things that I used to do, things like play basketball, run, play soccer, or play football. But I can still write, draw, paint, and toss a baseball around with my papere'.
Sometimes people get mad at me because I get to get in ahead of everyone else on a ride or else I get preferred seating/parking whenever we go someplace. People sometimes get frustrated with me because I am usually in the way (or so they say), and nothing makes me madder than when they purposely run into my wheelchair or give me dirty looks whenever they bump me.
Or they think I am faking my disability, which is even worse. Can't they see I have trouble moving my muscles, that I get tired easily, that what I have is not a joke? I am a person with a real problem, and I wish they'd learn to understand exactly what I have to go through every day! They should have to sit in a wheelchair all day or see what it's like to have muscles that don't work right! Then they'd learn their lesson!
When I am in the hospital (mostly for my breathing; I sometimes have trouble, and at night, I often have to wear oxygen stuck into my nose), people think that I am only doing this to get extra attention. Yeah, right. Like I made myself have trouble breathing! Like I wanted it to happen to me! Well, you're wrong! It comes on me sometimes, and whenever your breathing is involved, you'd better get medical help quick or else you're sunk!!
Well, I will write later. Daddy wants me to go with him to the studio. He's a tv producer; he's working on a program about kids with special needs, and he thinks I could be an asset to the program he's working on. Maybe I'll become a tv star; who knows??
Bye for now! Or as they say in French, Au Revoir!
~Harrington River Robicheaux, aged 10 years.
