Ali McKean Stone Disease Leads to Fight for 'Normal' Life
Ali McKean, 5, is battling an incurable disease that is literally turning her body to stone. McKean's parents are doing all they can to educate people about "Stone Man Syndrome."
"Her muscles and connective tissues are turning into bone," Ali's mother, Angela McKean, told WNWO. "It will eventually, if no cure or treatment is found, it will inhibit all of her mobility. Basically she's freezing into a statue," she explained.
Ali was diagnosed with Fibrodysplasia ossificans progressive (FOP) this past April; it is a disease that causes muscle fibers to harden and turn into bone. The extra bone growth severely limits Ali's mobility and could become fatal as more bone continues to grow.
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The disease is incredibly rare, affecting only 185 people in the United States, and Ali's mother said that the rarity caused her to go undiagnosed for five years.
"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," the mother explained.
Through it all, Ali still remains a tenacious 5-year-old, trying to do all she can with the mobility she has left.
"One of our biggest problems right now: she's our most active child," her father Gabe told WNWO. "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?"
Ali's condition causes extra-strong bone to grow after flare-ups, injuries, surgery, or any trigger. It's important that Ali remain healthy and safe, which is a problem for the active 5-year-old. Right now Ali is fairly healthy, but her parents know that there could be worse days ahead.
They are working to raise awareness of the rare disease by telling Ali's story to everyone they meet. They have started a website, Twitter account and Facebook page in order to educate others and provide encouragement for anyone suffering from the disease.
Angela and Gabe remain hopeful that their daughter's story will make a difference in someone's life.
"Just as Ali was given to us for a reason, you were brought to us for a reason," they wrote on their website. "I am Ali's Army! Will you be?"
"Prayers and support are greatly appreciated! Even if you only get to tell one person you are still telling ONE more person!" Angela wrote back to a post on WNWO. "Sometimes that's all it takes to get the word out!"
