LIFESTYLE
05/03/2015 12:48 GMT | Updated 05/03/2015 12:59 GMT

Meet Joey Suchanek, The Boy 'Turning Into Stone' Due To A Rare Genetic Disorder

Joey Suchanek just wants to be like other young men, but tragically, his body is slowly "turning into stone."

He has a rare genetic disorder called fibrodysplasia ossificans progressiva (FOP), also known as Stone Man Syndrome.

The condition causes muscle, ligaments and tendons in his body to progressively turn into solid bone, making movement more and more difficult. A flare up can occur at any time, for no particular reason.

"To tell you the truth, I don't know how I'm standing here to tell you my story. I don't know how my heart continues to beat, even when the odds are against me," he says in the video above.

"It beats to the sound of its own drum even when my greatest emery is myself."

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There are only 799 other people in the world with FOP and there is currently no known cure.

"I spend so many nights worrying that my disease will strike again," Suchanek says.

"I take a deep breath every morning when I start my day, because even with a massive flare up, there's nothing I can do.

"I get myself out of bed and do what needs to be done."

Suchanek isn't on any pain medication - determination alone is getting him through the difficult days.

"I try to control many factors in my life," he says. "But my only wish is to be able to control myself."

H/T: firsttoknow.com

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