School Closings And Delays

An ‘Angel in the Outfield’ Raises Awareness for Rare Disease in Moosic

MOOSIC -- When 12-year-old Mark Devoe threw out the first pitch at PNC Field in Moosic, it was a sight to behold.

Mark has a rare disease -- choroideremia -- that is slowly causing him to lose his vision.

His condition is genetic, but Railriders outfielder Mason Williams took a special shine to Devoe -- and became one of his biggest boosters.

"I fell in love with Marky really. The strength he has and the passion to go on every day just motivates me, and others as well," said Williams.

Devoe's condition has struck other members of his family as well.

"My father is 100% blind from it," explained Susan Devoe, Marky's mother. "If there isn't a cure and if he don't fight this, Marky will unfortunately be blind also."

Most people have never heard of choroideremia, and the Devoes say it's extremely rare -- only a couple hundred people have it. The victims are almost always boys, who learn between the ages of 4 and 6 years old that they will go blind...but the Devoes say there is hope.

Mark's mother Susan says a new genetic replacement therapy gives the family optimism for Marky's future.

"There have been 33 gentleman treated throughout the world, and it has all been successful," Susan added.

For now, Marky is doing well. He still plays baseball, even though at night the boy's vision isn't as sharp. Despite that, his attitude has been all positive.

"It doesn't stop us from doing things. He goes out, he's got a great attitude," said his father, Mark. "He knows we're working on a cure."

Mason Williams helped design the t-shirts that are being sold to help raise money and awareness about choroideremia.

Marky Devoe is a huge baseball fan -- his family holds season tickets to the Railriders even though they live in Washington, New Jersey.

The Choroideremia Research Foundation is behind the quest for a cure. If you'd like more information you can find that here and here.