Rare eye disease causing teens to go blind

Gary Ruot was the picture of health. A 17-year-old baseball player living in Florida.

He had just started to drive, when just a few months later, his vision started to fade.

First in his right eye. Weeks later, in his left.

"So in my central vision I noticed it was a lot more blurry and I could barely see anything," Ruot said.

He had to stop driving and quit playing baseball.

It was a similar story for Kevin Cervantes of Texas, also 17.

Action News met them both at Wills Eye Hospital.

"I guess it just happened overnight because one day I was perfectly fine, driving through the streets of town, and the next day, I couldn't see the board," Cervantes said.

Dr. Mark Moster says both have a rare, genetic disease called Lebers Hereditary Optic Neuropathy, or LHON.

"It causes visual loss in one eye, rapidly followed by the other eye, and it causes legal blindness," Moster said.

It can affect men and women of all ages, but it typically hits young men.

There's no approved treatment in the US, so both Gary and Kevin have enrolled in a clinical trial.

Dr. Moster says it's a phase three trial testing gene therapy.

Patients get an injection in both eyes. One is a placebo. The other is normal genetic material made in a lab that is meant to replace the abnormal genetic material causing the problem.

The goal is to prevent vision loss and recover some sight.

Dr. Moster is optimistic, but right now, doesn't know if it'll work.

Results are expected in about a year.

In the meantime, Kevin Cervantes continues to play the trumpet, marching with the help of bandmates.

Gary Ruot can use his peripheral vision to hit golf balls.

Both stay positive as their families hope for the best.

"My hope is definitely for my son to gain some vision back. As a parent, you want the best for your kid," Gary Ruot Sr. said.

LHON Affects only about 100 people in the U.S. each year.

If this works for this disease, it could lead to finding cures for other genetic diseases.

The trial is at seven different sites.

Wills Eye is still looking for eligible patients to be enrolled in the study.

Patients must be at the beginning of the disease with vision loss within the past six months, and have no other eye or systemic diseases that affects the eye.

For more information, contact Maria Massini, C.O.T. at 215-825-4725.

Gary and Kevin are both keeping up their activities as much as they can, hoping their vision will come back.
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