What to Know
- Epidermolysis bullosa is a genetic connective tissue disorder that makes skin extremely fragile; even minor friction can cause it to blister
- About 1 of every 20,000 children born in the United States each year is diagnosed with it
- There is no cure, and treatment focuses on pain and wound management
A Staten Island teenager has a rare condition that causes his skin to peel easily, leaving him with painful wounds that must be bandaged at all times and forcing him to bathe with bleach, his mother says.
Young John Hudson Dilgen, who lives in Tottenville, has epidermolysis bullosa, a genetic connective tissue disorder that makes skin extremely fragile; even minor friction can cause it to blister and tear. Internal organs can also be affected by the condition. About 1 of every 20,000 children born in the United States each year is diagnosed with it, according to federal statistics.
There is no cure, and complications can be fatal in some cases. Treatment focuses on addressing the symptoms — such as infection and itching — and preventing pain and wounds, according to the Mayo Clinic.
Dilgen's mother, Faye Purpura Dilgen, is trying to make her son's bathing experience, at least, a bit less painful. She started a GoFundMe page Jan. 25 to raise $40,000 to build a special bathroom for him because their current one is too small. In 12 days, she has raised nearly $135,000, more than three times the goal.
"We are overwhelmed by your kindness! Thank you!" Faye Purpura Dilgen wrote on the GoFundMe page Monday night.
Her son is expected to go to Stanford for a gene therapy trial.
Local
Meanwhile, his story has been going viral. Daymond John from the reality TV show "Shark Tank" heard that John Hudson Dilgen was a fan of the series and sent him a message on Facebook, praising the "amazing young man" for his bravery.
"I don't know why God picked you to inspire people and I think that you're here for a reason and you're going to change a lot of lives," John said in the Facebook message. "I don't know if I could be as strong as you but I want you to know that you have really inspired me."
John offered the boy a unique gift -- his global entrepreneurship ambassador coin that he received from former President Barack Obama.
According to the boy's mother, he loved it.
