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Baseball-themed charity event inspired by Castle Rock boy with rare "Stone Man Syndrome"

By: Erin Prater
July 14, 2017 Updated: July 15, 2017 at 8:18 am
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photo - Eleven-year-old Caleb Burgess, a Castle Rock resident, was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) last year. (Photo courtesy of the Burgess family)
Eleven-year-old Caleb Burgess, a Castle Rock resident, was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) last year. (Photo courtesy of the Burgess family) 

CASTLE ROCK — There are worse ways to spend a gorgeous summer Saturday than being surrounded by sleek dragsters and fun-loving, big-hearted baseball fans.

The Bombers for Bones Home Run Derby & Skills Competition, benefiting the International Fibrodysplasia Ossificans Progressiva Association (IFOPA), will kick off at 10:30 a.m. Saturday at Douglas County Fairgrounds ball fields in Castle Rock.

The daylong fundraiser was organized by the family of 11-year-old Caleb Burgess, who was diagnosed with Fibrodysplasia Ossificans Progressiva (FOP) last year.

Activities include a variety of baseball skill competitions, such as base-running and pitching, with ice cream and food trucks, a silent auction and a 9 p.m. showing of the classic baseball movie “The Sandlot” on the field.

“It’s definitely going to be a great day,” said Caleb’s mom, Stephanie Burgess. “It’s just a fun event with no pressure. The funds raised really do make a difference and go directly to IFOPA, which funds research directly.”

The stars of Saturday’s charity event: Caleb and three other Colorado children with FOP.

“He is so excited,” Stephanie said. “We’re all exhausted, and he’s on Cloud 9. Baseball is his thing.”

FOP is an incurable genetic disorder in which soft tissues such as muscle and tendons permanently turn into bone, eventually trapping those with the disorder in a second skeleton  unable to move, perhaps unable to eat or breathe.

It’s sometimes called Stone Man Syndrome.

When Caleb was diagnosed last year, “we were devastated,” Stephanie said. “Eventually it could take his mobility. It was the worst possible diagnosis.”

FOP arises from mutations in the ACVR1 gene. The disorder is rare, believed to occur in 1 in 2 million people. Several hundred cases have been reported, says the U.S. National Library of Medicine.

Caleb's genetic mutation is even more unusual, having been documented only four times.

This leaves the Burgesses without a playbook.

“We just don’t know how soon he’ll progress, if he’ll progress,” Stephanie said.

Caleb is old enough to know the severity of his disease. He gets a kick out of participating in fundraisers and meeting with the few other Colorado children affected.

“He knows pretty much everything there is to know about FOP,” Stephanie said. “We have FOP fact sheets that tell the worse possible case. Those he does not like. Other than that, he is pretty positive and happy.”

The three Colorado children with FOP whom he’s met “have more loss of mobility, so that was hard for him to process,” Stephanie said. “I don’t know that he processes that that might be him soon.”

For now, Caleb suffers pain most days but continues to play sports  the non-contact kind, as injury and even illness can result in the growth of new bone.

“We try to keep him from getting seriously injured,” Stephanie said. “We weigh, ‘How much do you let him do vs. do we shelter him?’

“We want him to be able to play baseball while he can.”

And play he will tomorrow  along with hundreds of baseball fanatics and well-wishers expected to turn out for the event, which already has brought in nearly $30,000.

“The more we do fundraising, the better he is, the more he feels like he’s helping,” Stephanie said. 

“We feel like it’s our reason that Caleb has a diagnosis, that we can make something good out of it,” she said. “The fact that he still has his mobility and is so healthy he’s a good ambassador for FOP, so positive about it.

“The only thing we can do is fundraise.”

HOW TO PARTICIPATE
Tickets start at $20
Register for Saturday's event here.
Participate in the silent auction here.

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