When they finished their creations, Ali and Kaiden made a beeline for an iPad in the living room. Their mother, Angela McKean, quickly, yet reluctantly, hollered for them to slow down, halting their playful pursuit.
For the McKean family, every day is a similar balancing act: sheltering Ali from harm, while still allowing her to enjoy every day.
“It’s the biggest struggle,” Angela said. “If she gets a boo boo, I can’t kiss it and make it better like other parents can.”
Ali was born with an extremely rare genetic disorder called fiprodysplasia ossificans progressiva, commonly abbreviated “FOP.”
Go to alis-army.org to learn more about fiprodysplasia ossificans progressiva.
You can also visit the “Ali’s Army” Facebook page or follow @AliMcKeansArmy on Twitter.
The disabling condition causes muscles and connective tissues to turn to bone, spontaneously and especially when damaged. Bridges of extra bone develop across joints, severely restricting movement.
“It’s a cruel disease that’s stealing her childhood,” Ali’s father, Gabe McKean, said.
FOP is sometimes referred to as “Human Mannequin Disease” or “Stone Man Syndrome” because it eventually renders its victims completely motionless, imprisoned in a second skeleton.
There is no known cure or treatment.
It affects just one in 2 million people, with less than 300 known cases in the U.S. today, according to the International FOP Association’s website.
Ali’s first bone growth appeared two years ago, Angela said. Dozens of doctors misdiagnosed her until a geneticist at Nationwide Children’s Hospital in Columbus finally pinpointed the problem this past year.
She seemed completely normal at birth, except for one telltale sign: her pair of swollen, malformed big toes, the only known early indicator of the disease.
On many days, Ali still looks like any 6-year-old girl — teasing her siblings, digging in the sandbox and playing with the family dogs and gecko.
On other days, intense, extremely painful bone flare-ups make it impossible for her to move.
Common tasks, such as climbing stairs, have become immense challenges because of restricting permanent flares.
“She’s adapting quickly, but there are a lot of things she can’t do anymore,” Angela said. “We hate that she has to adapt, but we’re glad she’s able to. She might walk stiff, but she still wakes up with a smile.”
For the McKean family, making Ali’s rare disorder public is a two-pronged effort: to promote awareness and, in turn, find a cure.
Through an aggressive social media campaign and partnerships with area school districts, the cause — now dubbed “Ali’s Army” — is quickly gaining momentum locally.
Sandusky Central Catholic School students recently donated a Thanksgiving dinner and money to the family at an assembly aiming to increase awareness about FOP. Ali will use the money on a Make-a-Wish Foundation trip to Give Kids the World Village in Florida next week.
Local businesses have banded together to make the McKean family’s home on Northwest Road handicap accessible. They’re installing a wheelchair lift and sidewalks and renovating rooms to provide Ali a downstairs bedroom and bathroom.
St. Mary’s Catholic Church secured a salon-style chair to make washing Ali’s hair more comfortable, since her neck movement is restricted.
The outpouring of local support has been surreal, and even overwhelming at times, Angela and Gabe said.
“It’s hard to accept that we need the help,” Angela said. “We were never expecting anything like this.”
Margaretta Schools employee Deanna Faber kickstarted much of the effort.
Ali’s siblings — Kaiden, 8, Lexus, 16, and Michael, 15 — are all district students.
The district lets Ali attend first-grade classes at Margaretta Elementary School using webcam chatting and an innovative VGo robot, which she controls from home. This helps keep Ali from getting sick, which could trigger more bone growth.
Angela and Gabe hope Ali’s rapidly spreading story will someday launch a more widespread effort, to both find a cure and help families get speedier diagnoses for their children.
Until then, they’ll do their best to protect Ali, while still allowing her limited days to be worth living.
“We’re telling everyone we can about her,” Gabe said. “It took five years for (Ali) to get diagnosed, and we don’t want any other parents to have to go through what we’ve been experiencing.”