Houston family hopes for a cure for rare genetic disorder

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Houston family hopes for cure for rare genetic disorder (KTRK)

For 11-year old Daniel Williams, video games are a godsend.

"It's the only thing I can really do without feeling left out, because no one really knows that you don't do other stuff," Williams said.

Daniel has an epic rivalry with his brother Evan, which is good because a debilitating and rare genetic disorder you've likely never heard of keeps him from anything too adventurous.

It's called Fibrodysplasia Ossificans Progressiva, also referred to as FOP. It is also known as Stone Man's syndrome for the way it turns healthy ligaments and tissue to bone, rendering some who suffer from it immobile. Any injury, perhaps a bump or a bruise, can cause a flare-up and cause bone to grow.

Daniel's parents, Tiffanie and Jeff, first noticed a problem when he was in kindergarten.

"He had a huge lump show up on the left side of his rib cage. We had the pediatrician look at it. We had it X-rayed," said Tiffanie. "We didn't have any answers and it was really scary."

Online research lead them to the right doctors, but FOP has taken a toll on Daniel, and there's currently no cure. He is much like any fifth grader. He loves Scouts, even rough-housing with his older brother, but any injury could cause irreversible damage, and Evan knows it.

"(I'm) definitely more protective of him, because if something happens to him, more bone, more bone, less movement," Tiffanie Williams said.

Daniel recently met others suffering from FOP.

"Some people kind of had a lot, so it kind of made me worry, but I don't really expect that, if I keep myself healthy," Daniel said.

That is the hope as they support research for a cure. Daniel's school friends recently helped raise money for research, thousands of dollars in one day. Another friend is selling the honey from her beehive as a fundraiser. Tiffanie said the donations to the International FOP Association give them hope.

"We have an organization behind us, but so many rare diseases do not," said Tiffanie.

Rare Disease Days is Feb. 28 this year, and there's more information at the Williams' family website about FOP, local events, and fundraising efforts: http://www.daniels-den.com/
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