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Medical Edge: The Boy with the Butterfly Skin

Updated: Monday, August 4 2014, 06:21 PM EDT
MONTGOMERY, Ohio (Liz Bonis) -- A sixteen year old boy from Montgomery is asking for your help to fund a cure for what some call, "The worst disease you've never heard about."
 
It makes his skin so fragile it's like the wings of a butterfly.  Shane Digiovanna is a lot like any other teenager.  He is a 16-year-old tenth grader with a Maltese dog named Fred.  He has a love for space and a quest for knowledge. 

When he was born about six weeks early Patsy Digiovanna said, "Retrospectively everybody thought he was born early because he was in pain.  But we always thought he was born early because it was like, 'Hey world, I'm here and I am ready to learn.'"

He's still ready to learn and ready to not be in pain anymore from something people have likely never heard of called Epidermolysis Bullosa, or EB.

When asked what hurts the most, Shane said, "Depends on the day really, everything hurts."

EB is a genetic condition where children are born without the anchoring fibrils as they known to hold down the skin; so even a gentle touch can cause the skin to fall off the body.

Shane said, "It causes my hands to web up and it also means it can tear if it gets bumped."
 
Shane's now a spokesperson for the Jackson Gabriel Silver Foundation.  They recently put together a video to help fund a cure.  It is called "The Boy With Butterfly Skin."

Under Shane's bandages it's as fragile as the wings of a butterfly.

Patsy told Local 12, "Day to day you have these massive parts of your body that just have no skin."

Shane's 14-year-old sister Meggie said her wish for Shane was, "To not have EB."

It was much like the wish Shane has of his own, "It would be great if somebody could find a cure."

Maybe with the community's help, they both say some-day soon we can.  Shane shares his painful story in hopes you will donate to the Jackson Silver Gabriel Foundation.

CLICK HERE for a link if you would like to help.


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