The guy on the right is my oldest son. He and the other boy have a few things in common… each is a gifted musician, each has a smile that lights up a room, and each has a personality that draws everyone to chat with them. But they have one major difference… the boy on the left has something my son wants to have soon… very soon.
The conference where these two met was for a very rare, degenerative, blinding disease called Leber’s Congenital Amaurosis (LCA). Both of these guys were born with this devastating disease. Kids with LCA are either born blind or nearly blind. Regardless of the acuity and visual field at birth, pretty much all LCA patients are expected to be “legally blind” by their late teens. And that “legally blind” status ranges from not being able to read regular print to not even being able to see light. Most LCA kids are”so blind” that they read Braille and use a white cane. Their field of vision grows smaller every year as their vision cells are dying, leaving their window to the world cloudy, spotted, and small… very, very small.
Like I said the new friend in the picture has LCA also. I snapped this picture when I was following the boys around an unfamiliar place where we attending a barbeque. There were hallways with lots of people, paths that turned this way and that, and ultimately a large field of picnic tables, trees and playgrounds to navigate. If you look closely, you will see that my son is being guided by his friend… the friend that has LCA just like him.
You see, the difference between the friend and my son, the thing he has that my son wants, the thing I want my son to have… is sight. This guy received gene therapy earlier this year. The therapy actually restored a large amount of his vision… and now he has enough sight to guide my son. He has enough sight to navigate without a white cane. And he has enough sight to actually see the people he is talking to, see obstacles in his way, and to see across a room (or in this case a a courtyard) to where it is he wants to go.
I want that for my boys (I have two sons with LCA). I want it for all of the kids living with LCA and other retinal diseases. And my boys want even more: they want to be able to pick up a print book and read it instead of waiting for a brailled copy. They want to walk through schools and malls and parks unassisted. And one day, they want to get their driver’s licenses. These things were impossible for my sons and the other thousands of kids with LCA just a decade ago. But by the grace of God, the miracle of science, and generous support from lots of donors, we are getting closer. Dollar by dollar, project by project, trial by trial, we are getting there.
The Eye Believe in Miracles BLOG is written by Kristin Smedley, mom of two sons living with blindness. The Smedley family co-founded the Curing Retinal Blindness Foundation and host the largest CRBF fundraiser, Bike the Basin. If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here. Together we can do so much.