Tuesday, 19th March 2013
HOPE FOR GAVIN – We take so many things in life for granted, and our sight is one of them. Even if you wear corrective lenses, the fact that you can navigate through your day avoiding obstacles doesn’t seem like such a big deal. But imagine if you lost your sight, even temporarily, how vulnerable you would feel and how different your life would become.
The young boy in the video above, Gavin Stevens, is only 4 years of age and was diagnosed with Leber’s congenital amaurosis (LSA) at just 4 months old. LSA is a genetic eye disorder which affects the retina causing complete blindness or severe visual impairment, typically at birth. Of all the retinal degeneration’s LSA is the most severe, with the earliest onset and has already robbed Gavin of most of his sight.
Facing the challenges of everyday experiences, Gavin’s parents work hard at providing as many typical situations as possible. In addition, Gavin has been learning how to play the piano, read Braille and using his cane. It has been a time of learning for the whole family as they teach Gavin about steps, doors, dressing, eating and the many other obstacles he will need to understand in order to overcome them.
“Alone we can do so little; together we can do so much”- Helen Keller
Being a four year old with limited sight is not easy, but Gavin is a happy, healthy and loving little boy. He takes challenges head on, like navigating the curb in the video. I found myself cheering him on as he fought to find the confidence to take that step of faith. His mother taped the milestone moment for Gavin, but also as an inspiration to other parents as there are approximately 3,000 children with LSA in the United States today. Each one learning how to manage everyday skills we accomplish with so little effort.
There is no cure for LSA but there is hope. The gene responsible for Gavin having LSA was not identified until this past year, giving doctors a total of 18 genes known to cause LSA and a plan for actively pursuing treatment. His parents set up a website to raise awareness and funds about the disorder, and named it after Gavin.
For more information please visit: http://www.gavinsfoundation.org/