Butterfly girl: Rare and painful skin disorder doesn't stop Washington teen

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Imagine having skin so fragile that the slightest touch or friction can cause it to tear, blister or even shear off.

That is the reality for 19-year-old Melissa Borunda of Washington.

Melissa is a remarkable and courageous teenager who was born with the rare and painful genetic skin disorder Recessive Dystrophic Epidermolysis Bullosa, a condition for which there is no cure.

Despite what she endures 24 hours a day, 7 days a week, that doesn't stop her.

Melissa is like many 19-year-olds...her phone and iPad are her lifelines. She likes shopping on eBay, and doing what everyone else does. She says, "Play games up there, Spider Solitaire and Facebook."

But Melissa is also unlike most 19-year-olds.

Her mom Linda says, "She blisters with any friction, heat or pressure internally as well as externally. So if she's walking she can get a blister, if she's sitting down she can get blisters, if she eats the wrong way she can get a blister."

Melissa is known as a "butterfly child." So fragile her skin can fall off. It's like having third degree burns all over her body.

Her mom says, "Her back's been raw. Her whole back's been raw for 10-years. No skin. She's about 60-percent raw."

Melissa says, "Even if I just hit my knuckle on something, because my knuckles are very sensitive, it hurts so bad so I have to try and not hit them on anything. And it just hurts everywhere."

The disorder also caused her fingers and toes to grow together. She says, "I got surgery on them a couple of times but they just grow back together."

Melissa's mom is her round the clock caregiver. She starts with taking Melissa's bandages off in the morning, bathing her, and rebandaging her.

Linda says, "Takes about six-hours just to take her bandages off, make sure I don't hurt her and then the water, because when I pour water on her head and she gets wet it burns, so It's very painful, I think It's the hardest for her, the bathing."

Melissa is on several medications to try and ease the pain. It's a pain she's had to battle all of her life.

When Melissa was born, doctors knew something was wrong when the skin on her nose and ankle ripped.

Her dad Ken says the first year was like walking around in a daze. He says, "I guess initially you say how can we do this. I can't imagine our life with her. And then you think I can't imagine life without her."

Linda says, "When she was a baby we couldn't pick her up under her arms or we would tear her skin off. They said she wouldn't live the first year."

When you look at Melissa you might think she can't do a whole lot. But you'd be wrong. She's very motivated and very inspirational. She graduated from high school in 2013 and now wants to try and get her driver's license and take a few college classes.

Her older sister Amanda says, "She doesn't feel sorry for herself. She's a very independent person, believe it or not. She can do a lot of things that most of us can't imagine doing."

Even with her fingers fused together, she is quite an artist. Some of her favorite things to do are to draw, paint and make jewelry. She loves painting butterflies, flowers and Mickey Mouse.

Her mom says, "She goes through a lot. She goes through a lot of pain. She has a lot of patience."

Her dad says, "She's a fighter. She's got the will and she really tries until she does things. She's got a real grit."

And she has faith, saying she knows her condition was no accident. Melissa says, "I was made this way for a reason so, but I don't know why."

So for now, she'll continue to focus on perfecting her drawings and dreaming about her future...perhaps some business classes one day to open her own jewelry or pet store.

Her dad says, "She became more you know than we thought she could ever be."

Caring for someone with this disorder is very expensive.

The Borunda's say the cost of the bandages and Melissa's medications is about $30,000 a year. Thankfully, there is a special Medicaid program that covers much of that expense.

While there is no cure, there is much research going on. You can click on the related links on this story where you can learn more, make a donation if you would like for research or for families to help cover expenses.