By Melissa Garcia

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.

fop fundraiser 5pkg transfer frame 22 Boy’s Rare Diagnosis ‘A Punch in the Gut’ For Family

Caleb Burgess (credit: CBS)

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.

fop fundraiser 5pkg transfer frame 1798 Boy’s Rare Diagnosis ‘A Punch in the Gut’ For Family

(credit: CBS)

“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.

fop fundraiser 5pkg transfer frame 1381 Boy’s Rare Diagnosis ‘A Punch in the Gut’ For Family

(credit: CBS)

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.

fop fundraiser 5pkg transfer frame 772 Boy’s Rare Diagnosis ‘A Punch in the Gut’ For Family

(credit: CBS)

“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.

TOGETHER 4 COLORADO: Latest Stories | Watch ‘Together With Karen Leigh’ | Share A Together 4 Colorado Story Idea With CBS4

Melissa Garcia has been reporting for CBS4 News since March 2014. Find her bio here, follow her on Twitter @MelissaGarciaTV, or send your story idea to mkgarcia@cbs.com.

Comments

Leave a Reply

Please log in using one of these methods to post your comment:

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s