Donations providing new bath for teen with excruciating skin disorder in Staten Island

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Michelle Charlesworth has the latest details.

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 now because of a video posted online last week, shot by his cousin Joe Purdy.


People online saw the video and 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.

"So look for us in our green shirts, you'll know us by our tutus, and we are calling ourselves 'Sister Act,'" Dilgen said.

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.
Related Topics:
healthskin caredonationschildren's healthNew York City
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