Five-year-old Ali McKean is suffering from an extremely rare condition that is causing her body’s muscles and joints to fuse into solid bone. If uncured, her body will slowly harden until she can no longer move.
Little Ali McKean of Bellevue, Ohio is suffering from Fibrodysplasia ossificans progressiva (FOP), or Stone Man Syndrome, a genetic disorder that’s only happens in one out two million people.
“If no cure or treatment is found, it will inhibit all of her mobility,” said Ali’s mother Angela McKean to WNWO. “Basically she’s freezing into a statue.”
Every bump and fall will add to more bone building in Ali’s body, and having surgery to remove the excess growth will only make the bone grow back, according to a report from The Daily Mail.
“Unfortunately, it took five years to get her diagnosed because a lot of doctors don’t know about it,” continued Ali’s mother. “So all of the procedures that they did to try to diagnose her just made it worse.”
Ali’s father, Gabe McKean, reached out to HollyBaby.com via email, telling us: “Knowledge is the only weapon so far against this terrible disease, and the more people who know about FOP the less likely it is that others will have this disease misdiagnosed.”
“We have a huge fight ahead of us and the fact that there is no cure doesn’t mean that there is no hope. It only means that we have to fight that much harder, and we will,” he continued. “We are Ali’s Army, and we will never give up.”
If you watch the video below, Ali looks remarkably calm and just like any other five-year old. However, her condition means she cannot run or play.
Ali’s parents are raising money for research and a cure, through their website Alis-Army.org. You can also reach out to their Facebook at Ali’s Army and on Twitter @AliMcKeansArmy.
Watch the video below:
— Lorraine Chow
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