'So hard to see him in pain:' Rare skin disorder makes Chapel Hill 4-year-old's skin as fragile as a butterfly's wings

CHAPEL HILL, N.C. (WTVD) -- Salim Dellicker is always covered in bandages. That's because the 4-year-old's skin is usually raw, itchy and blistered.

Salim has EB, or epidermolysis bullosa, a rare, genetic skin disorder.

Experts said 1 in 20,000 children are born with EB in the U.S. each year.

"It's incredibly difficult," said his mother, Laura Dellicker. "I'm not going to lie. There are some days where I just want to collapse in tears because it's so hard to see him in pain."

Dellicker, 29, adopted Salim from an orphanage in India one year ago, and the pair has since made Chapel Hill their home.

EB treatment is limited, and Salim goes all the way to the Children's Hospital of Philadelphia for care. He sees pediatric dermatologist Dr. Marissa Perman.

"We'll often refer to the patients as butterfly children, and it's a really nice analogy because it talks about the beauty but the fragility, really, of a butterfly," Perman said.

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Like a butterfly's wings, Salim's skin could break easily. What doesn't break so easily? His spirit.

"You'd never know that he has open wounds all over his body," Dellicker said. "There are times when he has no skin on his feet at all, yet he's running around on the playground, making other kids laugh."

Dellicker has to clean Salim's wounds daily to prevent infection and more wounds from forming.

Dellicker spends two hours a day wrapping Salim's entire body in gauze.

EB also affects Salim on the inside, making it difficult for him to eat.

"His esophagus can blister as well, and repeated blistering in the esophagus can cause the esophagus to stricture or scar together," Perman said. "That makes it very difficult to swallow food as well as just keeping down saliva or secretions."

Because of those difficulties, Salim's nurse has to feed him through a tube.

"I really love him," said Geneva Lester, RN, of Maxim Health Care. "It's like he's my kid, too. I feel that way, I really do."

Unfortunately, there is no cure for EB and treatment is expensive.

The cost of bandages alone can range from $5,000 to $10,000 per month.

Those with the most serious form of EB die before they are 30.

"He could live another year; he could live another 20 years." Dellicker said. "There are situations or certain things or moments where it kind of hits me from the emotional standpoint. Holidays and things like that, thinking about Christmas and how many more Christmases are we going to have together."

So, she makes the most of the time she does have with her butterfly child.

To help others, Dellicker started a non-profit to raise awareness about EB and help children with the disorder. More information about the group can be found on Facebook.