Rare Diseases

Extremely rare disease has Castle Rock family fighting to fund a cause and a cure for son

CASTLE ROCK, Colo. — Caleb Burgess loves baseball and just being a kid like any other active 11 year old except for a rare diagnosis.

“Fibrodysplasia Ossificans Progressiva,” his mom Stephanie Burgess said explaining how to pronounce his disease.

It’s known as FOP, a disease so uncommon it took several doctors and one of the world’s leading researchers to diagnose Caleb.

When he was seven, his mom noticed Caleb was losing mobility in his neck.

“We started researching … came up with FOP and even though it was super rare all of his symptoms and signs seemed to point to that,” she said.

But it took his Castle Rock family three years to have him diagnosed.

“It turns soft tissue muscles, ligaments, joints and cartilage into bone, said Caleb’s dad Scott. “And it essentially creates a second skeleton over the existing skeleton that imprisons the body.”

Caleb’s family and Arapahoe Youth League organized a home…

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