The Boy with the Butterfly Skin

It’s been labeled the worst disease you’ve never heard of. In a house call you’ll never forget, pediatrician Dr. Jim Sears meets John Hudson Dilgen, an 11-year-old boy living with epidermolysis bullosa, a rare, terminal skin disease that results in extremely fragile skin that blisters and tears at the slightest touch.

Epidermolysis bullosa, or EB, is an inherited disease passed through a recessive gene in both parents. There are three main types: epidermolysis bullosa simplex, dystrophic epidermolysis bullosa and junctional epidermolysis bullosa. The disease is very rare, affecting only one in every 20,000 to 50,000 children.

Dr. Sears explains that normally, the two skin layers — the dermis and the epidermis — are fused together with proteins. However, in people with EB simplex — like John Hudson — the proteins are missing, resulting in skin layers that slide and is easily damaged. The condition is very painful. John Hudson has to be very careful, even when walking, as any small force can hurt him and cause a wound.

“I think, why in life would I have to be tortured like this, when everybody else has happy lives?” John Hudson says. “I don’t understand it.”

 what it's like to live with epidermolysis bullosa, a rare and painful disease.

Dr. Sears makes John Hudson's wishes come true in a special house call.

There is currently no cure for EB. Treatments for the condition include wound healing, preventing infection, protecting the skin from trauma, alleviating pain, attending to nutritional needs and providing psychological support for the family. For John Hudson, his condition is so severe that it’s become too painful for him to attend school. Additionally, to avoid a deadly infection brought on by bacteria, John Hudson must alternate bathing in vinegar and bleach, which burns him.

Despite his painful condition, John Hudson tries to remain positive. “Even with EB, I’m still happy with the life I have. My friends, my family … everything I have, I’m grateful for,” he says.

The Doctors surprises John Hudson and his family with several gifts to make their lives brighter and, hopefully, a little bit easier. The family is overwhelmed when presented with a box of the season’s hottest new toys, as well as a gift card from Kohl’s, a weekend getaway at Great Wolf Lodge, an invitation for John to meet his favorite movie star — Winter the dolphin — a cleaning service from Maid Marines, and a $5,000 gift card from CVS pharmacy to help cover the cost of John Hudson’s medical supplies.

In an email to Dr. Sears, John Hudson says that it was the best day of his life.

If you would like to help fund research for EB, please consider donating to the Jackson Gabriel Silver Foundation.



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