By Danny Baggott @Dan_Baggie
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Videographer / director: Adam Gray
Producer: Nora Hakramaj, Ruby Coote
Editor: Beth Angus
John, 15, was born with Epidermolysis Bullosa, a condition that leaves him in constant pain and affects only one in every 50,000 children in the United States.
On a daily basis, John has to have the majority of his body wrapped in bandages to save him from infections and further harm – around 95 percent of John’s body is covered in open wounds.
But in defiance of the excruciating pain and discomfort, John, who lives in Staten Island, New York, tries his best to help other children with the condition by raising awareness online and 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.
“It’s more important than anything else, to let other people know what’s really taking place when you live with this condition.
“EB has definitely affected my whole life. I basically need help with everything.
“Any type of force or any friction to my skin causes a big wound.”
John takes a variety of medications twice a day, which includes probiotics and sodium.
He requires 24 hour care from his mother and father, Faye and John Dilgen, and his nurse, Nicole Collins.
Faye said: “I have a checklist of everything that John takes each morning.
“He has to have Dilaudid every four hours during the day for the pain.”
And John’s father, John Dilgen, 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.”
Just last year, John and his family successfully raised the money to buy him a brand new ‘special’ bathtub that has MicroSilk – something that researchers have shown improves the growth of tissue.
The MicroSilk bath adds up to 70 percent more oxygen into the water than regular tap water.
And nurse, Nicole Collins, helps to bathe John and treat his wounds every day.
Nicole said: “The MicroSilk is like little bubbles.
“I feel like the bad one, because I give him his bath every day. But he needs it.
“I get emotional when I talk about John, because he’s in a lot of pain.”
John added: “When I take a bath, the pain is just horrible. 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.”
And with the help of The Stephen Siiler Tunnel to Tower Foundation, a charity that provides specialised homes for people with disabilities, the family has now got a new home which has been adapted for John’s needs - including a treatment table, elevator and ramp enabling him to get around easier.
Despite the terrible hardship John is faced with every single day of his life, he still remains the shining light of his family.
Faye said: “John has a very outgoing personality. He is very friendly, he is very funny.”
Nicole continued: “John’s personality is amazing for someone in his situation.
“Even if he is in pain, he’ll still try to be positive. He’s got a really kind soul.”
And even now, John remains determined to carry on raising awareness to other children around the world who live with EB.
John said: “I usually get to meet a lot of people with EB because we hold a lot of events to raise money for research.
“I get to tell the truth about what’s going on with EB children. It helps to get the word out to people.
“And I usually get a pretty positive response from people.
“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.”
For more info, please visit: https://tunnel2towers.org