Mothers from around the world recently came together to offer support for one another, as they raise their children who have a rare disease that turns their bodies to solid bone.
The condition is called fibrodysplasia ossificans progressiva, also known as FOP. The disease causes the muscle tissue and connective tissue of the body to be gradually replaced with bone. It is believed to affect just one in every 2 million people worldwide, according to the Department of Health and Human Services, and only a few hundreds cases are known.
It was once incorrectly referred to as “stone man’s syndrome,” suggesting that the tissue turns to stone. But the condition results in the formation of bone.
Collette McGuire has seen her 27-year-old son, Cameron, live with the disorder and retain his independence. “He likes to do every single thing himself,” she told Inside Edition. FOP has kept Cameron in a standing up position. He told Inside Edition, “I can't sit in a chair because my legs and hips are frozen.”
The same goes for Jessica Scully, whose body is solid bone and who travels with a mechanical lift. Her caregiver secures her in a harness and carefully hoists her out of bed to lower her into her wheelchair. “My disability didn’t stop me from being independent, just made it a little tougher,” she said.
She and 50 other families went to Orlando, Florida, to spend time with their hero Dr. Fred Kaplan, who discovered the FOP gene. He told Inside Edition, “With the genetic discovery we went from hopeless to hopeful.”
FOP is a gene defect diagnosed at birth by a crooked big toe. The neck muscle is usually the first to solidify.
A 2-year-old named Gracie was born with that telltale crooked big toe. Her mom, Leah Terry, knows what the future will bring as the disease progresses.
One man named Winston lives with his jaw fused shut. Dr. Corrie Crow is a dentist who specializes in FOP, and she told her patient that his jaw “will never open again.”
At the convention, moms networked with each other and learned tips and tricks for supporting their children with the disease.
Kaplan is optimistic that there will some day be a cure for FOP, saying, “The horizon is no longer the distant future — its right in front of our eyes.”
To learn more about FOP, click here.