Family raises awareness about vision walk

FORT WAYNE, Ind. (WANE) One family whose son was diagnosed last month with a rare genetic disorder that eventually will lead to blindness is working to find treatment. Like many others in the community, these parents are devoted to funding research for a cure through Fort Wayne’s VisionWalk.

In many ways, 9-year-old Daniel Snyder is like any other child; he loves old cartoons, super heroes and football, just like his dad.

“He’s just a sweet, innocent, little boy and no child should have to lose their sight, but I don’t think anyone as sweet and innocent as Daniel should have to lose their sight,” said Scott Snyder, Daniel’s father.

Daniel’s grown up with several physical and developmental disabilities. He was first diagnosed with Congenital neutropenia disorder, which affects his immune system and suffers from Autism. More recently, Daniel’s parents noticed he was having trouble seeing, especially at night.

“He runs with his head down because he can’t see the ground if he runs with his head up.”

On May 21, 2015, doctors confirmed Daniel’s parents’ fear and diagnosed Daniel with Retinitis pigmentosa. This means that he has “bone spicules” forming on his retina, which causes him to see with tunnel vision. Most with the disorder become legally blind by age 40. The Snyders don’t know yet how fast Daniel’s disorder will progress.

“The developmental disabilities for him are bad enough, dangerous enough for him, that he needs to be monitored at all times. But if he doesn’t have his sight, then he can’t even direct himself to play or even to go to the bathroom or do anything by himself. So, with out his sight, he is pretty much helpless.”

According to the Foundation Fighting Blindness, about 100,000 Americans have Retinitis pigmentosa.

“On the way back from Riley, it was a very, very emotional drive and we were upset, scared. We didn’t know what to do, we just wanted to do something to help.”

Scott and his wife, Kristin got on the internet and found the VisionWalk. After developing a bond with others going through a similar circumstance on social media and getting involved in the walk, the family has heard that research suggests a cure is near. The family’s team, Team Daniel, has raised around $2,000 dollars.

“We’ve sort of found something positive to take out of with the VisionWalk. And we’ve worked very hard as far as making signs and t-shirts and getting people to donate and getting people to sign-up for the walk. So, we’ve put our work into that and something positive has come out of something that could have been very, very negative.”

The ninth annual Fort Wayne VisionWalk is Saturday, June 13th at Headwaters Park.

Registration opens at 8:30 a.m. and the walk begins at 10 a.m.

To register, visit VisionWalk’s website.

NewsChannel 15’s Gina Glaros will serve as the emcee.

Daniel is also being tested for an even rarer disorder, known as Cohen Syndrome, which encompasses all of his conditions. The family is confident that he has it. Only 1,000 people in the world have Cohen Syndrome.

 

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