CASTLE ROCK, Colo. (CBS4) – Communities in Colorado are coming together to help a boy in Castle Rock suffering from a debilitating and ultra-rare condition.
Fibrodysplasia Ossificans Progressiva (FOP) is a genetic disorder so rare that just five patients with it exist in Colorado, and 800 across the globe.
Baseball is one of 12-year-old Caleb’s favorite sports.
“We decided we want him to play ball and have fun and be a kid. Because if he’s going to lose his mobility anyway, you want him to enjoy every moment,” said Stephanie Burgess, Caleb’s mom.
While the soon-to-be high schooler might look healthy on the outside, he is suffering on the inside.
“A lot of days I’m in pain,” the young athlete told CBS4’s Melissa Garcia.
“His neck is fused together. His hips, his ankles and feet. And he has extra bones in his thighs and knees,” said Burgess.
Even small impacts like scratches, cuts, or shots can flare up the debilitating condition that causes muscle, ligaments and joints to turn into bone, like a second skeleton on top of the first.
Burgess and Caleb’s dad, Scott, first began noticing symptoms during his pre-school years.
Receiving the diagnosis took years of the couple’s own detective work.
“It was a little bit of a a relief, but also just a punch in the gut. To know that his future is… We don’t know,” Burgess said.
LINK: Caleb’s Story
Caleb’s prognosis is unknown, but his mobility could take a turn for the worst at any time.
With no known cure and no treatment for FOP, scientists need money for research.
“There isn’t any government funding for it because it’s so rare,” Scott said. “And so, all the support is through private donations.”
The Burgess family is putting on a Homerun Derby and Skills Competition fundraiser with all proceeds going to research.
The charity event is coming up on Saturday in Castle Rock.