A young boy with Treacher-Collins Syndrome shares his story.
People look at me, and right away they give me weird looks because my face doesn't look at all like theirs. But it is something I have learned to get used to, and I think I have done pretty well for my handicaps.
My name is Granger Paul Stedman, and I am 11 years old. I am in sixth grade at Eastview Elementary (or WILL be; I just got done with fifth grade), and I like school for the most part. I live in Tennessee, in the city of Nashville, with my mom and pop, Garnet and Gage Stedman, and also my two younger sisters, Glory (9) and Ginger (7), and also my little brothers, Gage, Jr. and Garrett (5; they are twins). We have four goats and six chickens; and in the summer, we enter them as part of our 4-H project. We show them every year at the county fair, and we always have fun!
Now, let me explain my disability to you before I go on any further. I can just hear you right now, asking me, "What in the HECK is Treacher-Collins syndrome?" Well, I am about to let you know about that now, and why I look like I do.
To make it as simple as possible, Treacher-Collins (or TC as I call it) is a genetic disorder that means that I was born without a chin, odd-shaped eyes that look quite deformed, underdeveloped cheekbones, and no outer ears. I had to have a tracheostomy in order to breathe; but I have now had that closed up, and I can breathe on my own, with no problems. I do have a scar on my neck, from when I had the tube, and I will always have that. I also have nerve deafness in both ears, and I have always had trouble hearing, let alone speaking clearly. I wear hearing aids in my ears, and I also know sign language if I don't feel like using my mouth in order to speak. At times I am embarrassed about my poor speech, so I would much rather use sign language or just write what I want to say on paper. There were people in my family who had Treacher-Collins, and I was one who got it. Now, nobody else in my immediate family has it, but I have a distant uncle on my dad's side, and also some cousins (also on dad's side of the family) who have it, and they have had to struggle with it almost as much as me.
I am tube-fed because I have problems gaining weight, but nobody knows about my stomach tube (which I had surgically put into place when I was a small baby) unless they see me without my shirt and see the tube; and I really have no problems feeding myself. I can hook up my tube to an I.V. stand, and I get my nourishment this way; or I have some special liquid stuff that I can pour directly into the tube; and the stuff goes to my digestive system that way. Now, it is a pain when people eat stuff in front of me, stuff like pizza, cake, or ice cream, because I can't taste my food, and it is so hard when my friends can pig out on stuff and I have to resort to my tube. I am skinny as a rail as a result of my inability to put on weight, and kids sometimes tease me about that, besides my obvious problems with my face, lack of chin, trache scar, and hearing-aids.
Besides being not being able to hear without help or having to eat by tube, I still have a pretty good life. I like to show my chickens and my goats with my family, and I also love to play basketball or read (mysteries; I am a big fan of Harry Potter, and I also like the Hardy Boy mysteries), and I also love to draw or write stories or poems. I mostly write about what it is like to live with a disability like mine, or how people treat me, and people say that I should consider becoming a writer because I am really good at writing. They also like how I draw, and they say I should go into art, or become an author and illustrate my books. I think that would be too cool!
Well, I will write more later. I have to get the garbage out, and if I don't get it done soon, my mom will have my head! She HATES it whenever I procrastinate! Well, I have news for her: I am not exactly thrilled with doing the garbage either; so it works both ways!
an interesting, educational write about a condition not many people know anything about. thank you for opening the eyes of those that haven't heard about this condition, and for continuing to write compassionate, strong writes for those that have these problems. BRAVA! i stand and salute you!
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People look at me, and right away they give me weird looks because my face doesn't look at all like theirs. But it is something I have learned to get used to, and I think I have done pretty well for my handicaps.
