14-Year-Old ‘Butterfly Child’ with Rare Skin Disease Opens Up About Life with Constant Pain: ‘It’s Difficult, But I’m Strong’

John Hudson Dilgen, 14, doesn’t let his debilitating disease keep him from living his life — or from fighting to find a cure for the painful condition.

The teen of Staten Island, New York, has epidermolysis bullosa, a rare inherited disease that causes the skin to blister, and has struggled with daily activities like bathing, eating and walking since birth. He lives in constant pain, due to the sores on his skin (they’re also present inside his body). And a nurse re-wraps his entire body in bandages each morning, because the slightest movement can cause his skin to sheer off.

Kids with the condition are often referred to as “butterfly children,” because their skin is as delicate as a butterfly’s wing.

“It’s really difficult, I’m in pain all the time,” Hudson tells PEOPLE. “You look at me and say, ‘This is so terrible for this kid!’ But I don’t want people to worry about me.

“I’m lucky I have my family to support me and my community behind me.”

Hudson acts as a spokesperson for EB Research Partnership, advocating for further research to find a cure for the disease, which affects 30,000 people in the U.S. And although he lives his life in constant pain — his focus is on helping others with EB.

“There’s so many other people it’s worse for,” he explains. “Some kids don’t have parents who can help them out like me, and I want to help ease the pain of other kids like me.”

An isolating disease

Doctors at NYU Langone Medical Center diagnosed Hudson, who was born without skin on his feet and without skin on his wrists, with EB at birth.

“Doctors knew right away something was wrong,” Hudson’s mom, Faye Dilgen, tells PEOPLE. “It’s a genetic disease and my husband and I were both carriers but didn’t know it, which is often how it presents.”

EB Research Partnership chairman Alex Silver tells PEOPLE the disease affects at least one in every 50,000 births and impairs the body “inside and out,” causing severe pain, disfigurement and, in some cases, death from skin cancer.

“An individual with EB lacks a critical protein that binds the layers of skin together,” says Silver. “Without this protein, the skin tears apart, blisters and sheers off, leading to severe pain, disfigurement and wounds that never heal. Blisters occur all over the body, as well as in the eyes, mouth, esophagus and other internal organs.”

Faye, a physical therapist in New York, and her husband, John, take care of Hudson in their Staten Island home with help from their other two children and a nurse, who dresses his wounds every other day by stripping his bandages and soaking his body in a salt pool. In recent years, Hudson’s hands and fingers have contracted and his pain level has increased, causing him to have trouble walking.

“His biggest struggle with the disease is the pain and the isolation,” says Faye, 52. “And that’s my biggest fear for him, feeling alone. Because basic socialization skills come from being in school and playing on the basketball team and going to karate lessons. But he can’t leave much, and it’s hard for him to interact with people and that’s lonely and a terrible thing at his age.”

Hudson attended public school up until the eighth grade, when the strain of a busy class schedule became too tiring. The teen now takes classes online (biology is a favorite) and spends his free time with his beloved service dog Dash watching movies, especially his favorite flick, Harry Potter.

“I want to be an actor when I grow up, I like to pretend I’m in someone else’s shoes,” says Hudson, who uses an adaptive stroller and scooter to get around. “It helps me to forget what’s going on in my own life.”

Hope for a pain-free future

Despite living with the cruel condition for 14 years, which the teen describes as “miserable,” Hudson has made it his mission to educate the public about EB and to work towards finding a cure.

“I’m not scared to talk about it, I just hope to reach enough people and get them to care so that we can try to make a difference for others,” he says. “Most of my life has been sitting at home in pain, on my couch. But I want to do something and talk about this and make a difference.”

He’s teamed up with EB Research Partnership to speak publicly about EB.

“He is opening up his life to the world to help all of those suffering,” says Silver. “The amount of pain that JH endures every single day is enough that most of us would give up and withdraw from the world. Not him, if you want to find a hero living among us, look no further.”

And in April, Hudson will participate in a gene transfer study at Stanford University, which his mother is hopeful can “make a big, big difference,” and perhaps even lead to a cure.

“We’re hanging our hat on this clinical trial,” she says. “It’s a terrible thing to watch our son suffer every day. But we have an amazing support system backing us.”

Staten Island support

Faye and John are “extremely thankful” for the love they’ve received from their Staten Island community and from caring strangers, who recently helped raise over $137,000 to get Hudson a special bathtub necessary for his delicate skin.

Through a GoFundMe page, the family is now able to afford a Microsilk tub to aid with the debridement of his skin while he bathes.

“It’s really awesome, I’m very excited,” says Hudson of the tub, which will be installed next month. “It’s going to help heal my body, which is great. I’m just very grateful.”

Faye, who will run the New York City Half-Marathon on March 19 with her sisters to raise money for EB research, says she’ll “never stop” doing everything she possibly can to make her son’s life as comfortable and pain-free as possible.

“We won’t give up no matter what,” she says.

Adds Hudson, “My parents are always there for me. With them, it’s difficult, but I’m strong and I know we can hopefully make a difference.”