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Iowa freshman lives with rare disease

1.7 from 6 votes
Tuesday, November 26, 2013

There are four people who live in Iowa that have a rare genetic disease called Fibrodysplasia ossificans progressiva, or FOP. Over time, their muscles and tendons turn to bone and they grow a second skeleton.

University of Iowa freshman Kyle McWilliams has it, but he still zips around campus.

He's mastered the bus system, the wheelchair ramps and elevators that help him maneuver to and from class.

Kyle got his official diagnosis when he was just two years old. At five – Kyle remembers what happened to one of his legs.

"My left leg started to lock up.  I could move it but I couldn't bend," he explains.

His legs, arms, neck, hips, and jaw are locked. The muscles and tendons around those parts of his body have hardened – turned to bone.

Kyle's friend, Corey Yardley, stays with him on campus and helps him out.

"We like to get yogurt, we go to the mall, we play video games, talk about sports, go to basketball games," says Yardley.

Sports are Kyle's passion. He's working toward a degree in entrepreneurship and sports management.

He chose Iowa because it's closer to his hometown and parents in Victor and his doctors are in Iowa City. Also, this campus is easier for him to get around compared to his beloved Iowa State.

"It's not like I'm coming here to become a Hawkeye – I'm still staying a Cyclone fan, but more secretly," he said.

Kyle's not as secretive about his favorite baseball team. He's a huge Cubs fan and hopes to work for them someday.

"I want to be in the Cubs organization with my financial entrepreneurial background.  I want to be involved with helping them win and controlling how they win," he says.

Kyle says he likes to have control. Even with a full-time helper he does as much on his own at college as he can.

"I really like it.  It's pretty easy.  I can be more independent," he said.

"He just doesn't complain about anything, never.  I've never heard him complain about anything," says Corey.

And Kyle could complain. Because living with FOP means dealing with pain.

"I have a pretty high tolerance to pain so it doesn't really bother me besides when I go to sleep or get up," he said.

But Kyle is a trooper.

With Corey at his side – the two of them work everyday at getting Kyle one step closer to his dreams. Because Kyle simply doesn't have time to worry about anything that could slow him down.

"It shouldn't affect our lives as a person.  We just need to try to be as regular as possible," he said

Author: By Amanda Krentz
Source: ABC News
1.7 from 6 votes
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