This is my brother, Benny.
Benny has a rare myelin disorder which has trapped him in an unresponsive body for much of his life. As a young child, we knew something wasn't quite right... He was considered "developmentally delayed". With the aid of therapy, by the age of 5, he was just barely able to speak and walk. Aside from having to work harder to learn how to operate his legs and gain enough coordination to use the potty, his mental faculties were pretty normal. Learning was slower but Benny's mind was always sharp. His awareness and his sense of humor was always on par with my brothers and I. He never missed a joke, and still never does. He still has that infectious smile and laugh.
After about the age of 7, we saw his motor functions start to degrade. It was painful to watch him struggle to learn how to walk and only a few short years later see him forced to use a walker, then crawl, and eventually lose all the independence he had worked so hard for and rely entirely on a wheelchair. As he grew the disease became more prevalent, he began to lose all motor control along with the use of his legs. He's no longer able to speak, his mouth barely able to form familiar words like "yes" and "no". While the myelin in his brain has not degenerated further, physical growth and natural changes in his body have left his mind unable to traverse the alien landscape that his body has become.
He's in an adult program for those with disabilities at his high school which ends in March. He will be 21 and will have graduated into "the real world".
My goal in this documentary is to shed some light on Ben, mostly from his perspective... who he is, our family, on-going therapy, special programs, science on this kind of disability, and most importantly share our experiences with those who have children with special needs, especially in this transitional time in his life.
All donations will go toward film making expenses including travel expenses for Ben (from Rhode Island to Las Vegas and back)
Donors will get a special thank you/producer credit for their loving support.
-I truly feel that this is going to be the most important film I'll ever make-
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