Morgantown Family Spreads Awareness About Rare Genetic Eye Disor - WBOY - Clarksburg, Morgantown: News, Sports, Weather

Morgantown Family Spreads Awareness About Rare Genetic Eye Disorder

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A local Morgantown family is spreading awareness and raising money for a rare genetic eye disease that the whole family is affected by.

Ben Portaro, 22, became legally blind in April 2013 after being diagnosed with Leber's Hereditary Optic Neuropathy, or LHON, in February.

Papa John's in Morgantown donated 20 percent of every pizza they sold Monday if, 'Ben's Eye Benefit' was mentioned. 

The proceeds will help the family buy Ben a magnifying glass that can make words 15 percent larger.

"With that device he can actually read again, though very slowly, he's reading. Also some eye glasses, that are like little mini binoculars, that he can use to look at the computer, or look at the TV again," said Sharon Portaro, Ben's mother. "And if he sits and focuses it in he'll be able to see and even go to the movies again."

Proceeds will also go towards helping Ben, and 7 other family members that have the gene, go to California to see a specialist.

August is Children's Eye Health and Safety Month, but the Portaro family of Morgantown is living proof that it's important for people of all ages to have his or her eyes checked.

Just a few short months ago, Ben Portaro was living the life of a normal 22-year-old college student. He was studying communications at West Virginia University and enjoyed hanging out with his girlfriend, family, and friends. Then one day, the unexpected happened.

"He was a healthy normal child. [He] did all the things kids were supposed to do. Graduated from high school. Yes, he got glasses when he was a young child, but so do lots of kids," said Sharon Portaro, a mother of three.

Ben was diagnosed with Leber's Hereditary Optic Neuropathy, or LHON, a genetic, degenerative eye disease that, eventually, made it virtually impossible for Ben to see anything but shadows.

"And basically, within eight weeks, he was legally blind in both eyes," said Sharon.

For inspiration, Sharon started reading about the journeys other people suffering from LHON and relied on the members of her close-knit family, many of whom were just starting their own personal battles.

"We know it runs maternally to the boys more prevalently, so we know that I would have it, the possibility of having it," said Lucas Trovato, Ben's cousin.

For Ben's brother Thomas, the risk of certain "triggers" of the disease changed his daily life, preventing him from doing seemingly-harmless activities.

'I like to have fires and stuff with my friends, so it sort of stinks now because that sort of ruled out a picture of having those every weekend….I just question whether doing that all the time will affect my eyes," said Thomas Portaro.

But nobody is ruling out the possibility that Ben will see again, and that includes Ben himself.

"He's still positive, he's still Ben....his personality still hasn't really changed," said Trovato.

"He's the same in a lot of ways, I think. He still likes to mess around and is still happy-go-lucky, but a big change is his girlfriend and everything, she's a big part of everything now, it's pretty awesome," said Thomas.

In October, several members of Ben's family will fly out to California to see an LHON specialist for prevention while supporting Ben during his treatment. 

"He amazes me I'm amazed what he can do," said Sharon.

Papa John's in Morgantown is doing its part to help Ben and his family. On Monday, August 12, 20 percent of orders will go towards Ben's medical bills. You must mention "Ben's Eye Benefit" when placing an order.

For more on LHON, visit its website.


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