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About me.
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I have a very, very rare chromosomal abnormality. It is called Partial Trisomy 6p. That means that I have just a few extra bands of genetic material on one of the short (or p) legs of one of my # 6 chromosomes. The doctors didn't expect me to live past 3 years of age, but I am 16 now. I'm hard of hearing (mild to moderate loss in both ears), wear hearing aids and I use American Sign Language and a special picture wallet to communicate. I attend a Special Education class for the Deaf & Hard of Hearing at a local high school. I also have to wear glasses. My upper eye lids droop because of my 6p, but my eyes no longer cross like they did when I was little. I used to have to wear patches on my glasses lenses to correct that. I have had many operations on my ears, right hand and 2 on my heart. I used to have ventilation tubes in my ears, but they fell out years ago. One of my ear canals has been widened. And the bones behind my ears called mastoids had to be cleaned out. I had had so many ear infections that they were full of infection and kept reinfecting my ears. I don't have many ear infections now. Two of my fingers on my right hand weren't separate right when I was born, so a plastic surgeon had to cut them apart so that I would be able to sign. I had to keep going back to get them worked on because I kept growing scar tissue that would pull my fingers down toward the palm of my hand. When I was about 11 months old I had to have a heart operation, because I wasn't getting enough oxygen circulated in my body. It was called a Patent Ductus Arteriosis Repair. Later when I was 12, my aortic valve had become so narrow that I was again having trouble with my heart. That time it was repaired by putting a catheter tube into my heart and inflating a small balloon. Then they pulled the balloon through my heart valve to tear it open. That worked just fine, so I never had to have open heart surgery. I'm fortunate that my heart is now stable and I can do all kinds of things. I have no restrictions on my activities. My best friend Ryan has Down Syndrome (Trisomy 21). He is 18 and in a vocational training program. When I graduate from high school I will go into a vocational training program too.
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My family & pets
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I live with my father, mother, and my older brother Thom. My older sister Lara is away at college. She is going to be an artist. She can draw, paint, & build sets for plays. Thom is also in college, but he works full time too. He fixes computers. My dad is an enviornmental engineer, and my mom does handicapped daycare. We have many pets. I have a grey cat named Ginger Snap. Every spring he brings us baby birds to raise that fall out of the tree next door. But they always fly away when they get big enough to. He's a very strange cat. I also have an African Leopard Tortoise named Jo. While my sister's away at school I'm helping care for her tortoise Bob too. They are vegetarians, like my sister. My brother has a Musk Turtle, named Dribble. It is aquatic and like Thom prefers to eat meat, but will also eat some plants. That's the kind of diet I prefer too. We keep many fish in Dribble's tank. Because we live in a canyon we also have several other cats too. They were all abandoned by their owners or born wild. My mom catches all of the new stray kittens, tames them and finds them homes. All of our cats have been spayed and neutered. Some of them are my sister's Happy Cat & Gann, my brother's Blue, my father's Oscar & Neighbor, and my mother's Vonkie & Bandit. Most of them are too old, lame, only semi-tame or have some other condition that makes them unplaceable.
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My interests:Bowling, Swimming, Computer, & Music
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I bowl in a Disabled Service's League. Ryan, Kristen, Alex and I are the "Pip Squeeks." Alex is in a wheel chair and Kristen is blind. I have some balance center problems, so
I use a bowling ramp to help me. So does Kristen & Alex, but Ryan insists on doing it all on his own. This year I'm bowling in the Special Olympics through my school too. I also take swimming lessons through United Cerebal Palsy. I used to be terrified of the water. I still don't like the ocean or any body of water that I can't see the bottom of, but I really like swimming pools now. I enjoy playing on my computer at home, and I use a computer at school too as part of my education. I like listening to all kinds of music. Note: All of the graphics on this website are courtesy of Xoom's Free Clip Art Library Antimated GIFS.
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