VIDEO: Boy With Rare Skin Disease Receives $100G from Strangers

John Hudson Dilgen, 14, was born with Epidermolysis Bullosa, a rare genetic disorder that causes blisters in the skin and mucosal membranes. John needs special equipment to treat his disease. There is a treatment called “microsilk hydrotherapy bath” that is supposed to help John by easing his painful condition. Strangers have raised nearly $100,000 for the boy, money that will go into buying the tub and will also help fund the renovations that the house needs to undergo in order to install the tub.

Read the full story below, provided by ABC7 Eyewitness News.

A boy from Staten Island who lives almost every day of his life in excruciating pain is taking the first steps toward a better life. John Hudson is a fighter; he’s spent every day of his 14 years in pain. “It’s hard, you know, sometimes my skin rips,” John said.
His life is changing for the better, as total strangers stepped up. They donated almost double the $40,000 requested to get him a special oxygenated bathtub. That means baths no longer will be as agonizing and his skin will heal faster.
He has a rare genetic skin disorder, epidermolysis bullosa, or EB. He is constantly on pain medications, he has to be, and his baths are filled with vinegar and Clorox to go after infection. Imagine that on open wounds. “Words cannot describe how thankful we are,” John said. He and his family could not believe they exceeded their monetary goal within two days last week. By the way, not for a moment does John feel sorry for himself, only gratitude he landed in this life with these parents. “They do absolutely everything for me. They are the best thing that ever happened to me,” John said. His mom smiles at the sweet words, and says people’s kindness will change her son’s life.
“John’s bathroom is in the basement, it’s hard to get to, he’s outgrown it, there isn’t enough room for the nurses to maneuver,” said Faye Dilgen, John’s mother. “We’re trying to put the tub against the wall so the nurses can get to three sides of the tub, which right now they can’t do.” She is running the Half Marathon again to raise money for her son and with the women in her family raise awareness for EB. ”
She and her husband John are amazed by their son, who in turn is amazed by how much they have done for him. “It’s true, you do everything. I wouldn’t be getting better if it wasn’t for you,” John said.
John, his parents and the people helping them are remarkable. He gets his special $6,000 oxygenated bathtub soon when contractors put in a new first floor bathroom. He’s also off to Stanford to try some gene therapy that will put six small skin grafts with corrected DNA on his wounds. It is a clinical trial that he really hopes will make a difference, and what he prays for is a cure. John added that he’s worried about the other kids out there that aren’t as lucky as he is.

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