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article imageMan With 'Butterfly Skin' Working Toward a Dream

By Mary Keshishian     Jul 28, 2010 in Health
Salt Lake City - A 24-year-old man has skin almost as fragile as butterfly wings, yet he's taken up a challenge most with this rare condition would never do. His dream is about who he really is, despite the risk.
Matthew Farnworth, from Riverton, UT, is a musician. He has a skin disease called EB. And with the money he makes as a musician, he will donate to the EB Foundation.
EB is short for epidermolysis bullosa, a rare genetic disease where skin -- almost as fragile as butterfly wings -- pulls off the body at the slightest hit. Matt was born with it; so was his brother.
He says that he isn't going to let this disease hold him back from anything he is drawn to do, and is good at.
Matt has taken up the challenge that most people with this disease would never do.
Despite the condition, Matt chooses to defy it in his own somewhat noble way. In addition to composing music, he's a professional in-line skater, an extreme sport also called rollerblading.
Though Matt flies through the air with fragile butterfly wings, so to speak, he competes in professional competitions with remarkable skill.
Matt and his friend Zach Nelson are looking at a 10,000-square-foot building, hoping to buy it for a mid-size indoor skate park.
The two, along with other friends, have designed and built huge ramps that completely fill a 65-by-45-foot backyard. These, along with other ramps and a skate shop, would be moved into the new building if they get it.
But the mid-size facility is just a stepping stone to a much larger 120,000-square-foot center for rollerblading, skateboarding and BMX (bicycle motor cross) that would bring national if not international competition to Utah.
If Matt's dream comes true, the second park called "We Are One," built near Bluffdale, could become the largest indoor skate park in Utah.
This extreme sport, his music, and helping others through donations and fundraisers are summed up in a bit of prose Matt has written about his philosophy:
"We're all in this life together and we are one. Without the light, I cannot see. Without the bad, I cannot taste the good. Only one color, nothing would be understood. The whole spectrum is what makes up life. The only way to make it right is to be yourself and love everybody else."
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