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Concert to raise money for Retina disease research

By Meghan Packer, Reporter, MPacker@wfmz.com
Published On: Dec 06 2013 09:30:00 AM CST

Concert to raise money for Retina disease research

WASHINGTON, N.J. -

Eyesight is something many of us likely take for granted. It's hard to imagine losing your vision, but that's the reality facing a boy from Warren County, New Jersey.

Markie DeVoe has an inherited disorder that affects the retinas called Choroideremia.

"It's a genetic disease that has been passed down from his grandfather to his mother now to him," explained his father, Mark DeVoe. He said it affects mostly males, so Markie's mother doesn't have severe symptoms.

"My father is now 73, he's been blind completely blind for about 25 years," explained Susan DeVoe, Markie's mother. "I always say I knew how to be a daughter of someone who was blind. I had no idea how to be a mother."

Markie has to wear sunglasses outside and is starting to have trouble with his eyesight at night.

"For the most part, where we lay in bed and we can see the dresser and the pictures on the wall or whatever, he doesn't see that," said his father.

Markie said, "It's pretty hard because if you're in the dark and nobody's there with you and you're on your bike and there's a small road, you can't really see if there's trees or houses."

The DeVoes are very hopeful that a cure is in sight and they're dedicated to raising money for research.

"Dr. Jean Bennett who works out of CHOP and the University of Pennsylvania just got approval from the FDA recently that we can start clinical trials and hopefully within the early part of 2014 we'll start with the trials and hopefully Markie will be part of that and within a couple years he'll be cured," said Mark.

A benefit concert on Sunday, Dec. 8 will help raise money for research. The Wizards of Winter will perform at the State Theatre in Easton. Ticket information is below.

Mark said,"For a disease where most people grew up knowing they were going to go blind, now we have real strong hope."

Ticket information for Sunday's concert:  http://statetheatre.org/events/the-wizards-of-winter-a-trans-siberian-experience/

More information about Markie:  http://angelsformark.com/

More information about Choroideremia:  http://choroideremia.org/