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SALT LAKE CITY -- A 24-year-old Utah 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, in part, is a musician. He's donating some of what he makes on his first solo album to the EB Foundation.
I don't think that anything should hold you back. ... I'm just drawn to so many things that are so fun; and it's just like, how can you not do it?
–Matt Farnworth
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.
But Matt has taken up a challenge most with this rare condition would never do. His dream is about who he really is, despite the risk.
He showed KSL numerous week-old wounds on his hands, arms and legs: evidence of how easy the skin slips away.
Despite the condition, Matt chooses to defy it in his own somewhat noble way. In addition to composing music, he's a professional inline 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.
"I don't think that anything should hold you back," he says. "I don't know, I'm just drawn to so many things that are so fun; and it's just like, how can you not do it?"
He watches his skin carefully, keeping wounds clean and making sure they mend, but he's focusing on a dream.
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 motocross) 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."
E-mail: eyeates@ksl.com
