Claremore Child Has Rare Disease That Turns Muscles To Bone

Zip Gordon is like every other 4-year-old. He loves to ride his tricycle, even play video games.

But Zip suffers from a rare disease called Fibrodysplasia Ossificans Progressiva or FOP, commonly called Stone Man Disease.

It causes his muscles to turn to bone.

"Basically what it does, he gets a flare up in his muscle, it causes swelling, which then that swelling turns to bone," Jacob Gordon, Zip's father, said.

Jacob Gordon says the new bone comes from swollen cartilage and can appear anywhere.

"He gets ribbons of bones on top of his muscle, basically forming a second skeleton underneath his skin," Jacob Gordon said.

Zip was diagnosed with the disease last summer.

Stone Man is one of the rarest diseases in the world, afflicting only 1 in 2 million people.

They can treat the swelling to try and prevent the calcification, but once it turns to bone, there is no treatment.

Right now, Zip's bones have fused on his neck and back, his left biceps and on his shoulders.

"It hasn't been that hard," Jacob Gordon said. "He's ours. He's mine, he's Amy's, he's our little boy and this is just the way it is."

The life expectancy for someone with FOP is between 30 and 40 years.

"The long-term thing is not something that we want to think about. We want it fixed before then," Amy Gordon, Zip's mother said.

Amy Gordon says the disease has been targeted for a government study because a cure for it may also help people with arthritis.

The Gordon's hope Zip's story shows other families suffering from a rare disease that life is what you make it and to do everything you can to find a cure.

"We feel like maybe us letting everybody know that Zip's like this and we're okay with it...it's what we got and this is how we're going to deal with it," Jacob Gordon said.

A fundraiser for children suffering from Stone Man Disease will be held on Oct. 6, 2012 in Claremore. For more information go to www.zipperq.com

Learn about Rare Disease Day at www.rarediseaseday.org/