Friends With Rare FOP Disease Reunite
They suffer from one of the rarest diseases on earth that makes their bodies turn rock solid. INSIDE EDITION was there for a gathering of people with incredible challenges and inspiring courage
It was a reunion of old friends, and they all have one of the rarest diseases on earth.
Nancy Sando said, "My jaw is completely fused."
Ashley Kurpiel said, "My leg is fused at the hip."
Their condition causes their muscles, ligaments, and tendons to become bone, turning their bodies rock hard.
“We are turning into human statues. We can't move,” said Kurpiel.
Three friends who suffer from a disease known as FOP (Fibrodysplasia Ossificans Progressiva). There are only 700 known cases in the world, and almost half of them are in the U.S.
Kurpiel lives outside Atlanta, Georgia. As a toddler, her arm was amputated after doctors misdiagnosed her with cancer. They missed the tell-tale signature of FOP disease, a crooked big toe. Now, her muscles have started hardening into bone.
“I cannot move this arm away from my body. It’s like superglued to my side, my upper arm, because it does not move” said Kurpiel. Her neck and spine are now fused. Five years ago Kurpiel's leg got stuck in a bent position.
Kurpiel said, “Its stuck and that thigh is rock-hard bone.”
A four-inch platform shoe enables her to walk. The 30-year-old showed INSIDE EDITION how she uses a drawer handle to take off her pants. A convenient closet door knob helps her get them back on.
Patrick Doerr showed INSIDE EDITION his lack of movement and said, “This is it for movement in the shoulders.”
Doerr's jaw is nearly frozen shut. “Just enough to talk,” said Patrick.
His mom, Gretchen, a pediatric nurse, was heartbroken when he was diagnosed.
“He was 17 and big and burley, and next thing you know he's in such severe pain,” said Gretchen. She watched helplessly as his muscles and joints turned to solid bone.
Patrick said the condition causes, “Very intense swelling, very intense pain.”
At 52, Sando is one of the oldest living people with FOP. As she inches her way toward the bed, it becomes obvious that her body is stiff as a board.
“God has given me the ability to find the joy in the little things in life,” said Sando.
“It’s a tremendous hardship. FOP is a devastating disease,” said Dr. Frederick Kaplan.
Dr. Kaplan of the University of Pennsylvania is the leader in the fight against the disease, and personally sees to every case.
“We adore Nancy and Ashley and Patrick. They are all a testimony to human spirit. They're shining example what human beings can do when faced with such incredible adversity,” said Dr. Kaplan.
With the reunion set, getting there would prove quite an undertaking.
Sando and her care giver left Michigan’s Upper Peninsula, driving three hours in her minivan. Kurpiel gets a little help down the jet way in Atlanta, then walks on board her flight and takes her seat. Patrick boarded his plane in Philadelphia. When he found his seat, the 30-year-old accountant enjoyed a drink with his own ingenious invention, an extra-long straw.
The three friends finally made it to Detroit and settled in at their hotel. They shared techniques for doing all the things we all take for granted. They gathered by the pool, and Kurpiel took a refreshing swim.
Dinner proves the most challenging of all. Since Doerr and Sando’s jaws are all but fused shut, they first use their lips to mash the food against their teeth, then push it through gaps.
And everywhere they go they draw inspiration from each other. It helps to know that they are not alone.
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