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Ryan is 19 years old and was diagnosed when he was 7 years old. Here is his story...in his own words...
Hi, my name is Ryan Poteet. I am 19 years old. I have just started my 1st year of college. I have a syndrome called Hajdu-Cheney. This syndrome causes multiple hearing loss, weak bones, teeth and mouth problems. Sometimes there are a lot of things that I would like to do but I won't be able to because I have a deformity in my neck. I had a surgery about 12 years ago on my neck. Even though I have weak bones and feet problems, I am a terrific dancer. I do the talent show in my school every year. Everybody thinks that I am the best dancer.
Sometimes I feel sad and upset because I'm afraid kids would tease me. But, I have a lot of friends. Sometimes I feel proud and happy because my mom has found other people that have the same syndrome as me and some look just like me. Also, I get to meet interesting people like Morgan Fairchild, NASCAR driver Jamie McMurray and Ashton Lewis, Jr. So, I have different feelings about having HCS.
Most of the time I do not let my problems get me down because I am a brave boy. I made it through almost 12 surgeries. I play golf almost every month, I can break dance, and I write poems and songs.
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