5-year-old John Hudson Dilgen was born with an extremely rare condition Epidermolysis Bullosa which causes blistering of the skin and mucous membranes.
Watch the teenager who was born with an extremely rare condition
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John, from Staten Island, New York, is forced to wrap his body in bandages as 95 percent of his body is covered in open wounds.
The condition, which affects one in every 50,000 children in the United States, leaves John in constant pain.
His mother and father, Faye and John Dilgen, and his nurse, Nicole Collins take care of him 24 hours.point 333 |
Faye said: “I have a checklist of everything that John takes each morning.point 64 | He has to have Dilaudid every four hours during the day for the pain.point 120 | ”point 123 | 1
John’s father added: “We got educated very quickly on what this was all about. It was pretty devastating in the beginning. Even now, when he has to take a bath, he knows it’s going to be painful and yet he knows he needs to do it. Every time I think about it, it still upsets me.”
Despite his condition, John has become a motivational speaker and is helping other children suffering from the same condition by organising charitable events.
John told Barcroft TV: “When I got into motivational speaking, at first, I didn’t think of it as that. To me, it was just about talking the truth. I felt like I had to tell the truth about kids who live with EB.”
He says EB has affected his whole life and he needs help with almost everything.
He says he loves getting to meet people with EB as he holds a lot of events to raise awareness and money for research.
For him, it is really important to raise awareness about the rare condition as it will help people with EB.
He says: “Even though I have this condition, I hope that someday I can grow up and be like my parents. I want to do something where I am helping other people.”
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