Haledon Ty's Eyes Motorcycle Run 10-01-11
SPONSORED BY THE SMOKE AND IRON MOTORCYCLE CLUB IN CONJUNCTION WITH JIMMY GEEZ SPORTS BAR & GRILL............A FEW WORDS FROM TY ROCKEY'S PARENTS: Our son Ty was born in December 2004. When the doctor pronounced him healthy we couldn’t have been happier! He was our first baby and we were thrilled to have him. Those early weeks we were in heaven and spent hours staring at our beautiful baby boy. Unfortunately after 2 short months of bliss we noticed that he still wasn’t making eye contact and he developed roving eye movements called nystagmus. After much waiting and tons of testing he was diagnosed with Lebers Congenital Amaurosis (LCA). LCA is a rare genetic retinal disorder that causes blindness at birth or shortly after. We were devastated to learn that our little boy was blind. We continued on to genetic testing to find out which gene was causing Ty’s LCA. There are 12 different genes that are known to cause LCA and more that haven’t been identified. At this point we had heard about gene therapy and were hoping that his gene would be known. After more testing and waiting it was confirmed when Ty was 10 months old that he had LCA1 which is caused by a GUCY2D mutation. We were glad that his gene was identified but also sad because LCA1 causes the most severe vision loss of all the genes. For people with LCA the last few years in research have been very promising. There have been huge strides particularly in gene therapy and stem cells. We know that it is only a matter of time before our son and other children like him will be able to see. Ty is now a happy and very funny 6 year old. He has amazed us with his progress and all he has managed to accomplish even without vision. He is above average in school, he plays guitar, baseball (with a beeping ball),and soccer, he swims, fishes, goes to camp in the summer, etc. etc. We can’t wait to see what he will accomplish when he does have vision! For more information on Ty or the research being done to cure LCA visit www.tyseyes.com
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