One in 2 million. It may be your odds for winning the lottery, but for 5-year-old Ali McKean, it means a lifelong fight for mobility.
Ali was diagnosed with Fibrodysplasia ossificans progressiva (FOP) in April, a rare genetic disorder only affecting 185 people in the U.S. Sometimes called "Stone Man Syndrome," FOP causes muscles, ligaments and other connective tissues to turn into bone until the body becomes frozen like a statue.
"Unfortunately, it took five years to get her diagnosed because a lot of doctors don't know about it," said Ali's mother, Angela. "So all of the procedures that they did to try to diagnose her just made it worse. Doing biopsies on the swelling, the surgeries... It seemed like they were doing all these things to try to make her better and try to find out what was going on when all they were doing was making her worse."
But Angela says Ali never complains about her stiffness or pain and greets everyday with a smile, inspiring everyone around her. To help her fight, the McKeans rallied together friends, family and strangers to create Ali's Army, a team dedicated to raising awareness about FOP.
Join: Ali's Army
Soft connective tissue progressively turns to bone in FOP patients./ Courtesy photo
Even still, the McKeans have paid for all of Ali's medical bills out of pocket. The family also needs to restructure their house to accommodate her mobility needs and future treatments.
"It's extremely frustrating because as a dad, daddies are supposed to fix everything, be able to protect their kids. How do you protect your child from themselves?" Gabe said. "One of our biggest problems right now, she's our most active child. She's five. She wants to do whatever a 5 year old does. How do you tell a 5 year old not to be a 5 year old?"
Thanks to generous donors in the community, the McKeans raised $3,000 at a yard sale last weekend and they plan to hold future fundraisers for Ali and others affected by FOP.
"Ali is 1 in 2 million, support the 1. Never underestimate the power of 1. You are 1. You can help make a difference," Angela wrote on the Ali's Army website. "Just as Ali was given to us for a reason, you were brought to us for a reason. I am Ali's Army!....Will you be?"