People with 'butterfly' skin condition triumph through pain - 12 News KBMT and K-JAC. News, Weather and Sports for SE Texas

Courtesy ABC News

Life isn't easy for children and adults whose skin is so fragile that the tiniest friction can tear it away. They're called "butterfly children," and they have a range of genetic skin conditions called epidermolysis bullosa, which means they can't properly make the protein that anchors skin in place.

But they aren't all children and they're tougher than your average butterfly.

Rabble of Butterflies

Lizzy Hendrickson is 3 1/2 years old and has epidermolysis bullosa simplex, a mild form of the condition that is still painful. Yet she dresses her own wounds and sometimes lets her 6-year-old big sister help even though it hurts.

Megan Barron, 22, has dystrophic epidermolysis bullosa, a severe form of the condition characterized by scar tissue. Her hands have scarred into fists except for her thumbs, which have been surgically freed for typing and other tasks, and she has a few blisters on the pale skin of her face, framed by strawberry blond hair.

Yet she was determined to go to college in North Carolina instead of her home state of Florida. She's set to graduate in May with a major in history and a minor in political science. She's even been a White House intern, beating out hundreds -- if not thousands -- of applicants from around the country.

Tripp Roth had the most fatal form of epidermolysis bullosa, yet he survived longer than doctors ever expected and lived to be 2 years and 8 months old. Even if his face was filled with scabs and blisters, his mother was always astounded at how Tripp could always muster up a smile.

Rafi Kopelan is 5 years old and has a more severe form of the condition, warranting two surgeries to prevent scar tissue from blocking her throat and a bone marrow transplant to help her skin make the protein it needs to stay anchored in place. She's shy, but she has no problem explaining to middle school students why her skin is full of wounds that don't always heal. She even opens up with a joke to put her audience at ease.

"It's literally the worst disease you've never heard of," said Rafi's father, Brett Kopelan, who now runs the Distrophic Epidermolysis Bullosa Research Institution for America. "The simplest of things, like dental cleaning or brushing her teeth, is enough to rip the inside of her mouth open, yet this kid gets up and goes to school every day with a smile on her face. I don't know how she does it. I don't know how any of these kids do it."

Epidermolysis bullosa occurs in one of every 50,000 live births, according to data from the National Epidermolysis Bullosa Registry. Although it's divided into three main types, depending on which dominant and recessive genes the child inherits from his or her parents, there are really closer to 27 different varieties, and every patient is different.

Finding Acceptance

An estimated 25,000 to 50,000 people have epidermolysis bullosa in the United States. But with a total population in the country of almost 314 million people, the disease is rare enough that raising awareness is a key issue the community.

Just this week, a family with children who had epidermolysis bullosa filed a lawsuit against a Golden Corral restaurant in Michigan for violating the Americans with Disabilities Act. According to the complaint, the restaurant owners approached the family and asked what was "wrong" with the baby who was covered in scabs. Although the child's mother explained the condition, the owner said the condition was obviously a "contagious" disease and that the family should "go find somewhere else to eat."

For 22-year-old Barron, the experience is all too familiar. She said she's been asked if she was contagious, and said she's very tactful about how she dresses to avoid making people uncomfortable about the open wounds on her skin.

"My heart sinks for these kids," Barron said in an email that she typed with her thumbs -- a skill she taught herself in the third grade. "So many times I fear revealing too much of my skin and bandages. ... I fear this very reaction if someone sees too much."

In a phone interview a few minutes later, she explained that people get "freaked out" by the open sores and it sometimes makes her feel like a leper. Although Barron, like many other children with epidermolysis bullosa, was initially worried about making friends in school, by the time she got to college she learned to ignore the stares, relax and let her real friends in.

She said her friends accepted her feeding tube (for extra nutrition) and her full-time nurse (for help with daily bandaging to avoid infection) without making her feel weird about it.

"Hanging out in my room, going out on weekends, it's just Megan -- and that's what I love about them, that they treat me that way," Barron said.

No Known Cure

Parenting children with epidermolysis bullosa is often a full-time job, and sometimes that job is expected to come to an abrupt end because the condition comes with many internal complications that often lead to early deaths.

When Courtney Roth gave birth in 2009, her son, Tripp, had mostly unblemished skin aside from a blister on his head. She would eventually learn that he had junctional epidermolysis bullosa, the most fatal type of the condition because it leads to loss of fluid and infection from so many open sores. Blistering of internal organs, malnutrition and other complications are also common.

So Roth started blogging to vent her feelings and chronicle the short time doctors told her she would have with her newborn, whose skin would blister no matter how well she bandaged his fragile body. No one expected Tripp to live until he was 2 years and 8 months old, or that the blog, "'EB'ing a Mommy" would win her recognition as an ABCNews.com Reader's Choice Hero in 2011.

Roth, now 27, said mothering Tripp was trial and error the whole way because every wound would be different. Some would heal and others wouldn't. She found a community of other parents to help her through it, and she now offers her contact information to other parents of children with epidermolysis bullosa.

"These moms and these parents, they're yearning for somebody that's going through the same situation," she said. "It's probably one of the cruelest, hardest things to have to go through, to watch your child suffer like that knowing you can't do anything about it."

She said she rarely slept more than 20 minutes at a time, but she was fortunate that she didn't have other children and that she did not have to work during that time.

"I was always in his face," she said. "We just loved him. We loved him so much. I don't know if that's what kept him going. I know for a fact that he kept me going."

Tripp died in January 2012, but Roth isn't ready to read over her blog entries just yet.

"It made you think: If he could survive and smile and laugh and play, then there's nothing in the world to ever complain about or be upset about," she said. "I just miss him a lot."

READ MORE FROM ABC NEWS