People With Rare FOP Disease Find Comfort At Annual Convention
A dance party was in full swing as a DJ got the crowd moving, shaking, and spinning. But this is a dance unlike any you've ever seen. The party-goers were all born with a rare disease called Fibrodysplasia Ossificans Progressiva, known as FOP. It’s caused by a gene defect that is gradually turning their bodies into rock hard bone.
They call themselves FOPer's. They are also known as "The Human Statues" or "Petrified People," names they do not particularly like.
One person suffering from FOP told INSIDE EDITION, “People judge us before they get to know us. We have ambitions.”
Watch More About People Suffering From FOP Here
Fifty nine of these brave souls have come from across the country to Orlando, Florida for their 25th annual convention. There are only 800 such people alive in the world today afflicted with FOP.
Thirty-two-year-old Ashley Kurpiel's arm was amputated. Her leg, neck and spine are now rock hard bone. She told INSIDE EDITION, “We're human beings turning physically into human statues."
Her little niece wanted to go in the pool for a swim with her aunt. Getting into a pool isn’t easy, but Ashley’s game for playing splish-splash, with her niece.
Ashley said, “It’s hard for me to play with her. It's (swimming) something I can do with her.”
Most heartbreaking of all is seeing the devastating effects on young children. It begins with FOP's signature diagnosis—a crooked big toe.
The youngest FOPer at the convention is three-year-old William Ellicott, from Oregon. William's right arm is permanently stuck in one position. His back is riddled with bone growth. His mom, Katrina, says most people don't understand what's wrong her little boy.
She said, "(People ask) ’Did he break an arm?’ I do a lot of explaining.”
Twenty-three-year-old Krys Michelle from New Jersey showed off a daring Victoria’s Secret bikini.
At 57, John Redding is one of the oldest of the conventioneers in attendance. He even crafted a spoon with a golf club to make it easier to eat.
Brianne Leshanse, an 18-year-old has to force food into her mouth because her jaw is fused shut. She said, “I can't open my mouth.”
Dr. Fred Kaplan is the world's leading expert on the disease. Treating these patients requires scientific knowledge and a lot of heart.
Getting ready for the convention is a big undertaking.
Ashley’s mom helped slip on a new robotic arm. A shawl covered it, and then it was time to join the party.
There they were, her fellow patients having a great time on the dance floor.
Krys had changed out of her bikini and was wearing a zebra-pattern cocktail dress and three-year-old William? He was dancing up a storm and making new friends. Having a great time comforted by the fact that he was not alone.
Some good news: Researchers have recently found the FOP gene and human trials for a possible treatment are about to begin.