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How in the world can we do all of this at once? I work full time, serve as the chapter president of the Foundation Fighting Blindness and run my own charity. My son is in a very advanced AICE program at his school and he's on the cross country team or track team depending on the time of the year, and is trying to keep his band together. We spend our time dealing with everyday issues and with the visual impairment our family was dealt. There's just not enough time to fight blindness too. BUT we find the time. We must fight blindness. If we don't, it will win. Blindness never wins in our family. If blindness wins, then my brothers are not the successful people they are and my son is not on his way to being a successful man contributing to society. Here are my awesome brothers with me back in my skinny days. Nothing can stop us!    In this picture, we still had so much ahead of us. Our kids were still really little people with so much potential! It's been years and our kids are almost adults now. Because X-linked juvenile retinoschisis is an x-linked disease, my brothers did not have children with the disease. Their children don't have it but their daughters can carry it on to their children. I was a carrier. My son has the disease. Like my brothers, he is visually impaired. Growing up with my brothers made me realize that even if I had a child with this disease, he would totally be okay. My brothers are. With the right support and motivation, this visual impairment wouldn't stand in his way. We just have to fight through the obstacles and he has to become his own advocate, which he has. Today, my son participates on his school's cross country and track teams. Another parent recently asked, "How do you let him run? Doesn't he trip and fall?" I said, "Of course he does, but don't we all?" My son just ran the 1500 meter in 5 minutes and 45 seconds. Apparently in the track world, that is middle of the road, but in my world it's pretty awesome. Plus, he is with a group of kids that support him completely. Accommodations are made. When they have practice in the dark, which is often, the coach makes sure my son runs on smooth pavement. My son will endure any test because he wants to succeed in life. Those tests are not just the academic ones, which he excels at by the way, but also the clinical trials. He not only wants to become an aerospace engineer but he want to do his part to cure blindness. We are going to our last visit next month for the historical clinical trial in Portland, OR. The folks at Mass Eye and Ear have already contacted us to be part of the gene therapy trials in Boston. We are so excited. We are on our way to finding a cure for this disease my family has lived with for generations! Brendon does what he can to promote awareness for finding these cures. Just recently, Foundation fighting Blindness featured us in a video and also HealthSource magazine wrote our story http://mydigitalpublication.com/publication/?i=289193#{"issue_id":289193,"page":14} If you would like to join us in our fight to end blindness, please contribute to MOMS for Sight and better yet, come to our annual gala and have some fun! http://www.momsforsight.org/black-ties--blindfolds.html
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