We are The Smedley Family from Bucks County, Pennsylvania.
We are blessed to have three active, funny, intelligent, and talented kids that make us proud every single day. Our boys, Michael and Mitchell, are affected by Lebers Congenital Amourosis (LCA). It is the most severe form of Retinitis Pigmentosa, as it has a very early onset. The boys lost most of their vision in the first three months of life and continue to lose a little bit each year. While their vision loss doesn't stop them from acting like typical kids, it has made some parts of life quite challenging!
Until 2009 we hadn't done much in terms of fundraising for vision cures because 1. our boys were quite comfortable with their blindness and we didn’t want to try to “fix” anything they didn’t seem to think was “broken” and 2. we did not yet know the gene responsible for their blindness. As luck would have it, we finally found out their gene just as Michael started talking about wanting to see like everyone else and began verbalizing his hopes and dreams of accomplishing things that require good vision.
So we took it as a call to action! We started fundraising for a major vision research foundation and we had incredible support from our family and friends! When we looked into that foundation to see where our boys’ gene research progress was, we were shocked to find it wasn’t anywhere near the top of the priority list, and we had no say in directing our fundraising to make CRB1 a priority.
Since we wanted our efforts to directly impact the progress toward our boys' dreams of sight, we decided to begin the process of funding the research, and directing the focus of that research to treatments, on our own.
It took one phone call, one question, and one life-changing answer – YES!
We asked doctors to help us, and they said yes!
We are so blessed to have connected in a few short months with these other families that share the same dream: to give the gift of sight to our children. We believe with the help of our family, our community, and this amazing CRB1 group, our boys’ dreams will come true: Michael will one day soon see well enough to pitch for his little league team, fly an airplane, or pilot a spacecraft. Our Mitchell will see well enough to be a terrific soccer goalie, design and build a skyscraper, and actually see his incredible art. They both dream of getting their chance to live their current passion – play on an ice hockey team! And they have one more very important dream to kids, especially boys, everywhere: they want to drive a car when they are 16!
For us, their parents, we want their dreams for them and more: we would love for them to see the baseball when they swing, see their sports heroes they look up to, see the mountains that they climb, see the pride in the faces of their family, and see the light in each other that brightens the lives of everyone they know.
For info on our #1 fundraiser BIKE THE BASIN go to www.bikethebasin.org
To follow the adventures of our family and the boys' accomplishments, "like" the Bike the Basin FACEBOOK page.