The triumph of "Team Ashley"

7:53 AM, Nov 9, 2012   |    comments
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PEACHTREE CITY, Ga. -- A young woman in Peachtree City has found an inspiring way to deal with the harshest and rarest of tragedies.

"There's 700 in the world with F.O.P. today," says 30-year-old Ashley Kurpiel. "So it's not ... big numbers."

F.O.P. is short for a disease that takes way too long to say, but is simple - and horrifying - to describe.

"I basically say I'm turning into a human statue," Ashley says, "where if it takes me over before the cure is found, I will not be able to move anything except my eyes and my lips."

When Ashley was two, doctors misdiagnosed her with cancer and, during surgery, amputated her right arm. They diagnosed her with F.O.P. a few months later, when she couldn't move her left arm from the elbow up. Inside Ashley's body, her muscle regenerates as dense bone.

"Eventually my jaws will fuse shut," she says, "where I will have to eat and talk with my lips completely frozen."

A cure may actually come soon; as Ashley says, "They've already given FOP to mice, and they've cured the mice."

But until it does, Ashley must simply hang on and savor the body and precious moments she has.

Except, that's not what she does.

Ashley surfs, dances, and does whatever she can to make new moments.

"She showed me pictures of surfing," recalls friend Cindy Ferst, "and I was just blown away."

Cindy met Ashley earlier this year at a convention for amputees. The two are now a team in Ashley's latest venture: wheelchair racing.

They have formed Team Ashley, and they are holding a fundraiser this Saturday to help Ashley obtain a legitimate, comfortable racing wheelchair.

"Whatever I'm doing, I'm blessed to have the body I have right now and not be in a wheelchair 24/7," Ashley says. "I always knew ... this was my life and it was supposed to be this way."

To learn more about Team Ashley, check out her Facebook page. Team Ashley's Wheelchair Benefit fundraiser is this Saturday, November 10, at 6 PM at American Tavern in Loganville.

For more stories by Matt Pearl, you can follow him on Twitter and Facebook.

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