Ten-year-old fighting rare disease that's turning her body to bone

Angela and Gabriel McKean from Ohio are the proud parents of four children: two boys and two girls. When their youngest daughter, Alexandria, was born in January 2007, they had no idea what they were about to face. It soon became apparent that their daughter was suffering from a very rare disease.

Although it was clear that something was wrong, it took a very long time to get a correct diagnosis of Alexandria's condition. Parts of her body were constantly swelling up for no apparent reason and they became hot and red. Her toes were also twisted in the wrong direction. Her parents desperately tried to help their daughter, but one doctor after the other prescribed treatments that didn't help. All the while, Alexandria was suffering horribly.

It turned out that Alexandria had been born with a very rare disease that affects only one in two million people: Fibrodysplasia ossificans progressiva (FOP)

This fatal disease causes the body's entire connective and supportive tissue to calcify and become bone-like. The effect is that a "second skeleton" forms and gradually makes it impossible for the sufferer to move.


Perhaps the strangest thing about the disease is that bruising and skin punctures actually enhance the growth of the bone and the advancement of the disease. This makes it impossible to simply remove the bone surgically. Due to several misdiagnoses, poor Alexandria had already undergone several operations before her condition was properly identified and each one of them had only made her condition worse.

Alexandria was already five years old when she finally received the right diagnosis. Since then, the family has focused on making her life as comfortable as possible and enabling her to do the things that other children do.

Alexandria is now 10 and relies on a special form of underwater physical therapy to ease her pain. But year by year her mobility continues to decrease and she has become increasingly reliant on a wheelchair.

Alexandria's parents have dedicated themselves to her well-being, and they also want to raise awareness about her condition in the hopes that more research will be done to find a cure. Even if one is found, chances are it will come too late for Alexandria. Thankfully, she has a loving family to support her and help her get the most out of life. And as long as she keeps smiling, there's a good chance that she will do just that.


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