TOTTENVILLE — A Staten Island teen born with a rare skin disease that causes his skin to blister and shear off — leaving him with wounds equivalent to second and third-degree burns — might get some relief thanks to his neighbors' generosity.
The family of John Hudson Dilgen started a GoFundMe page last week to raise funds to build a new bathroom on the first floor of their Tottenville home and buy a special hydrotherapy tub that could heal his skin faster.
The campaign met its $40,000 goal in just two days — and raised almost $98,000 in a week.
"It's been a tremendous response," John Hudson's mother, Faye Dilgen, said. "It's been far and away nothing we ever expected."
John Hudson, 14, was born with epidermolysis bullosa, or EB, which causes his skin to peel off and leaves him with wounds on most of his body.
He's covered nearly head to toe in bandages and sometimes can't walk because the cuts on his feet are so painful.
Currently he uses a cramped bathroom in the basement of his home, which he accesses using two motorized chairs down narrow staircases, and the water from his baths causes extreme pain to his body.
"It’s unbearable," he said in a video shot by his cousin John Purdy that was posted to the fundraiser's online page. "There’s no word that describes how bad it is."
His doctor recommended a new Microsilk bathtub that would help and his mother saw other people online with EB who'd had success with it.
She decided to build a new bathroom in the first floor for the tub to make it easier for John Hudson to get to, but that would require her to move her kitchen and destroy a wall.
A contractor estimated the work would cost between $50,000 and $75,000 and she took to GoFundMe to raise part of the funds for the work.
The excess cash from the campaign will go towards the project and has lifted John Hudson's spirits, his mother said.
"Everyday John Hudson looks at the page. His eyes are wide open, 'Mom you won't believe it," she said. "It's astounding."
Aside from the new tub, John Hudson was also accepted into a clinical trial for a gene therapy treatment in Stanford.
"We’re hoping combined this will be helpful to heal his wounds," Faye said. "We never thought there'd be treatment, let alone cures for him."
To help the cause, Faye and her sisters plan to run in the New York Half Marathon in May to raise money for the EB Research Partnership.
