4-Year-Old Grows Second Skeleton

You've heard of weird disorders, but nothing like this.

Fibrodysplasia ossificans progressiva (otherwise known as FOP) has been categorized as one of the rarest, most disabling genetic disorders. FOP causes new bones to actually grow inside the muscles, tendons, and ligaments. Bridges of bone will eventually connect across joints in the body, limiting body movement and essentially growing a "second skeleton."

WIth only 600 cases of FOP around the globe, it was a shock to the Watertown community when 4-year-old Shane D. Terry was diagnosed with it. Young Shane already knows that he has extra bone in his body, but according to his mother, he thinks this is normal.

Says his mother, Kimberly A. Hayes: "When he was first diagnosed, I wanted to keep him in a bubble."

If Shane is injured, FOP causes a flare-up of the body, or a rock hard lump near the injury, often mistaken by doctors as a tumor. Eventually, however, the flare-up recedes. His big toes - malformed from FOP - also make him uneasy on his feet, which could cause him to fall and hurt himself. Mrs. Hayes tells Shane to wear shoes at all times, even in the house, to help him walk easier. Even during recess, where Shane is active and energetic, he has to wear a helmet for protection.

Although Shane's shoulders and back are only affected now, the disorder will eventually spread to the rest of his body and lock him in a stationary position, whether it's standing or sitting down.

Mrs. Hayes once opted to have the extra bones surgically removed, but often times that only worsens the condition of FOP.

Unfortunately for Shane, the average life expectancy of a person with FOP is 41 years, and by their thirties, they are already bound to a wheelchair. Mrs. Hayes, on the other hand, is confident that once Shane is older, he will be able to understand the complexity of his disorder and come to terms with it. But for now, he's perfectly content with playing with his new Batman toy and race car video games.