Girlâ??s fight with Stone Man Syndrome goes global
Tue, 13 Nov 2012 17:06:42 GMT —
"Things are so different from last year, it completely changed our lives. Everything we do, we now have to plan it around her."
Last November, Angela and Gabe McKean were still trying to diagnose their 5-year-old daughter's mysterious medical disorder. They didn't know that each time the doctors examined her, that each time she got an MRI and each time she fell down while she played, her muscles were slowly turning into bone, freezing her into a human statue.
The McKeans had never heard of Fibrodysplasia ossificans progressiva, also known as Stone Mane Syndrome, because it affects only 1 in 2 million people in the world.
"Right now, there's no treatment, or cure for it," Angela said. "We're really focused on trying to keep (our story) in the media and keep it at the forefront because it's so easy to diagnose. But unfortunately, all of the misdiagnoses out there for FOP, it only makes it grow faster because it is progressive, it's going to progress regardless."
According to IFOPA.org, FOP is "one of the rarest, most disabling genetic conditions known to medicine" that causes muscles, ligaments and other connective tissues to turn into bone until the body becomes immobile. When Ali was diagnosed this past April, the doctors pointed out that the unique shape of her toes were the number one indicator of FOP.
After five years of testing, the McKeans knew they didn't want to see any other family struggle for as long as they had, which became the catalyst for Ali's Army, a support group dedicated to spreading awareness, helping families and finding the cure for FOP.
What started with just a few followers became an international network after Ali's story went viral online in May, prompting features in The Daily Mail and The New York Times, a documentary and an interview on the Jeff Probst Show, which airs at 3 p.m. on Tuesday, Nov. 13 on WNWO.
"We use social media all day to reach out to new people, even celebrities," Angela said. "We now have a massive support system with Facebook, Twitter and the website. It's put our faith back into humanity. People are always leaving us supportive messages."
Since the McKeans shared their story with WNWO in May, Ali's condition has gotten worse than ever after enduring 11 straight months of flare ups, which occur when the body starts to generate new bone. But Angela says Ali stays resilient, waking up every morning with a smile.
"I think it's a trait they have, every single FOP-er I meet is happy and the outlook they have on life is phenomenal," she said. "You see that and don't take things for granted anymore."
While it's been a busy year, the McKean's work isn't done. They have several fundraisers planned to help other families affected by FOP and to fund research for treatments.
"Even after the cure is found, it won't be the end of Ali's Army," Gabe said. "Kids will still be diagnosed and have to deal with the pain. We want to educate people, we want to see early diagnoses."