Michael Sharp’s apartment is a short walk from the beach, but Michael isn’t much of a beachgoer.
He looks the type: laid-back, low-key, introspective, hair about shoulder length. But the self-described “kind of a geek” would rather play video games—his favorite pastime—than surf or bask in the sun.
Besides, Michael is still self-conscious about the scars on his chest where a battery-powered generator resides—scars he didn’t have six years ago. But then, before his surgery in 2005, he was confined to a bed or wheelchair with his body twisted into painful, uncontrollable contortions.
Unbeknownst to his parents and his doctor, when Michael was born on March 8, 1989, one of his genes wasn’t perfect. There were no outward signs or symptoms, and he and his little sister, Katherine, ran and jumped and grew just like the other kids in his South Florida neighborhood. He played ice hockey and swam on a team.
And then, when he was 11, his right hand started to curl. His teachers were the first to notice that his penmanship was turning into scrawl. His wrist had become fixed in a bent position, pushing his fingertips in and under his hand when writing, aiming the pencil in the wrong direction, at a backward slant.
“I remember my mom telling me I was writing strangely,” Michael recalls. “I would just write crooked. I don’t know how to describe it.”
His mother, Victoria, bought a wrist support, but it was no match for the force seizing Michael’s forearm. As she realized that no amount of physical or mental effort could help her son control his arm and hand, Victoria made appointments with a pediatrician and a neurologist in Ft. Lauderdale. Michael was diagnosed with dystonia, which causes muscles to contract involuntarily, forcing affected body parts into awkward and often painful positions.
Several types of dystonia exist. Michael’s was triggered by that tiny flaw in his genetic code.