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New York teen with rare,  debilitating disease says helping others is his life purpose


John Hudson Dilgen suffers with epidermolysis bullosa but that hasn't stopped him from inspiring others

Image source: Special Books by Special Kids video screenshot

Some people spend their entire lives trying to discover their purpose. That's not the case for a New York City teen who suffers from a rare and painful disease called epidermolysis bullosa.

Sixteen-year-old John Hudson Dilgen was born with the condition that causes his skin to tear apart, blister and shear off easily. Usual daily activities including using a spoon or holding a cup are a struggle for him.

In a recent interview with Special Books for Special Kids, a nonprofit that shares inspiring stories of individuals with adversities, John Hudson said he believes there is a reason for everything.

"Everything should happen for a reason," he said. " ... Every once in a while, when I meet someone and they say that ... I've helped them because sometimes it's hard to think, 'How have I helped you?'

But after 16 years of ... meeting so many people saying, 'You know ... you're an amazing person," John Hudson continued. "Maybe I've started to believe them. And maybe I do do something right.

"So, if this is the payment of helping other people, bring it on."

What is life like for him?

John Hudson requires around-the-clock care by his parents and nurse.His body has to be wrapped in bandages to help protect his fragile skin.

Something as simple as bathing is very painful for him because of his open wounds.

"When I take a bath, the pain is just horrible," John Hudson told the Daily Mail in November. "I mean, I hate having to get in the water. But I know it's going to help my skin, so I have to just do it."

Even though he lives in pain and takes more than a dozen medications each day, the Staten Island teen said he's never given up hope.

"I may have sounded like it, but no, no, I've never truly lost hope," John Hudson said through his tears, adding that his family helps keep him strong.

"You have a choice, I think," his father, John Dilgen, said in the video. "You can choose to live miserably or you can choose to live with a smile. So I think that's what our choice has been."

"If you literally can't do anything about it then make the best of it," the teen added.

When did his parents know something was wrong?

John Dilger said he knew from the beginning that something wasn't right.

"The instant he was born, it appeared as if someone had taken a surgical glove and rolled it up to the tip of his fingers," the father explained. "I saw the panic in his [the doctor's] eyes."

Epidermolysis bullosa is a genetic disease with no cure. It causes deformities of the hands and feet. EB occurs in about 20 out of 1 million births, according to Stanford Children's Health.

What else did John Hudson say?

John Hudson explained to SBSK that he loves superheroes because they don't ever give up and they always fight until they save the day.

"Just because something happened doesn't mean you can't do it," he said. "It just means it's hard."

Watch John Hudson's interview with SBSK:

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