Texoma Native Battles Rare Genetic Condition

Six months ago President Obama lifted the ban on federal funding for stem cell research. Now doctors are working to find cures for everything from diabetes to cancer.


Nick Mahler grew up in Wichita Falls and Burkburnett. He's one of only 3 Texans and 300 Americans with a rare genetic mutation called Fibrodysplasia Ossificans Progressiva or F.O.P.


Nick says, "Some people call it a prison that you're stuck in. It's just what you make of it."




Trauma has caused bone to grow over his muscles and ligaments. His body is basically growing a second skeleton on top of his own bones.


"They kept telling my parents that I wouldn't live to 14, wouldnt live to 16 so they let me do whatever I thought I was capable of doing. Ride Horses, ride bicycles in the Hotter n' Hell Hundred," he says.


Nick says science has recently made huge steps towards finding a cure.


In the last 6 months, I think they've had more, progression than they've had in the last 15 years because of all the restrictions that have been lifted. It's definitely come along a lot faster than they had expected, he says.


Nick's Wife Lori says, All these years they thought it was strictly a muscle disease, and it's not. It's carried in the blood stem cells, and that's how it travels through his body.


Nick, a mortgage banker, says he's not afraid to live his life. He's been bungee jumping, drag racing and despite the F.O.P. says he doesn't want to just sit around.


"There's things you can't change, you just have to keep going. Live life as full as you can."


Nick and Lori say they're hopeful that advances in science and medicine will help them fight F.O.P.


Lori says, "It may not help Nick, but it's going to help somebody else. Like the little kids with the same disease. And it could help Nick, help him walk again."


Mahler says once scientist determine how to reverse his bone growth, they can use that science to find a cure for bone loss, more commonly known as osteoporosis.

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• fibrodysplasia
• ossificans
• progressiva
• wichita
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