Kaplan has always seen patients regularly in his office, but to form a better idea of their daily lives he began visiting them where they lived. In January of 1991 he and Randy Cohen, one of the first FOP research fellows, flew to northern Michigan to see a married couple with FOP: Andy and Nancy (née Whitmore) Sando.
The Sandos, in their late thirties, have a vitality and a charm that transcend their surprising physical appearance. Both recline in power wheelchairs. Andy's body is virtually straight, with his legs slightly crossed, while Nancy is mildly bent at the waist. Their necks are both solidly locked. Nancy's jaw is fused, and recently Andy's fused as well, a circumstance that forced him to give up the trumpet. Their elbows are locked at nearly identical right angles; at rest they sit with their upper arms at their sides, fingers laced together, almost as though in prayer. Their wrists and fingers are barely affected, giving them the ability to manipulate things if they use a bit of ingenuity. Each has a cordless phone fastened to a two-foot-long stick. Nancy extends her reach with her "itcher stick," a wooden back scratcher that she finds invaluable. She is a surprisingly efficient typist, able to peck at an angled computer keyboard with a device she fashioned thirteen years ago—a dowel with the rubber tip of a baby pacifier taped to each end.
Nancy led a normal life until the age of five. Then one September evening her mother started to bathe her and suddenly let out a scream. On the back of the little girl's neck, concealed beneath her long blonde hair, was a warm, reddish, doughy mass almost the size of a grapefruit. Nancy's parents rushed her to the hospital, where she spent almost six weeks while the doctors ran tests and took biopsies. She returned home with a diagnosis of terminal cancer and the bleak prognosis that she would not live until Christmas. Nancy's parents waited for the end, withdrawing as people so often do from the dying. But Christmas came and went and Nancy got no worse. In fact, once the pain of this first flare-up passed, she began to look much better. Her parents consulted a series of specialists, and after a few months had a correct diagnosis of FOP.
Until she was eight, new bone appeared in Nancy's shoulders and down her spine. For seven years her condition was stable; then, when she was fifteen, her left shoulder froze and she lost most of the motion in her left elbow. An ill-advised operation on her right elbow had the inevitable effect of making it worse. Nancy carried on normally, though instead of playing on the playground or joining sports teams she managed the school greenhouse and helped to run the office. Five years later she fell while getting into a car; a new spurt of bone growth began in her right hip and quickly progressed downward, locking her knee and ankle. Nine months later her left leg started to be affected. She began to use a walker and then a motorized scooter. At twenty-four she was fitted for a custom wheelchair.
Nancy studied computer programming and got a job in a computer store. She was so popular and successful that she left after six months to start her own consulting business. She worked forty or fifty hours a week in addition to pursuing a full schedule of volunteer activities as an advocate for the handicapped and a speaker at churches and civic-group meetings. In 1983 she gained a degree of local notoriety when, to illustrate the challenge that the sidewalks and buildings of her home town posed to the handicapped, she persuaded a newspaper reporter and a Kiwanis Club member to get into wheelchairs and carry out a set of tasks she assigned.
After work on April 12, 1985, a special bus with a wheelchair lift picked Nancy up at a client's company. The driver parked outside the house Nancy shared with her sister and brother-in-law and lowered the motorized wheelchair lift from its vertical, folded position to form a horizontal platform. She rolled herself on and locked her wheels in place. The bus service owned several vehicles with lifts made by different manufacturers, each with different hand-held controls. On the most common model the bottom one of three buttons lowered the platform to the ground. On the bus Nancy rode that day, when the driver pushed the bottom button, it folded the platform back into the bus. Nancy was catapulted backward, and ended up with her head and shoulders against the opposite side of the bus.
Over the years the muscles in Nancy Whitmore's neck had been almost entirely replaced by bone, which broke under the force of her fall, leaving her head dangling grotesquely. Fortunately, her spinal cord was not damaged, and the immediate injuries, despite appearances, turned out to be relatively minor—at least, they would have been minor in anyone else. Her body's misguided attempts to heal her assorted bruises, breaks, and sprains transformed normal muscles and tendons into bone. Irregularly shaped new spurs of bone immobilized her back and made sitting for any extended period acutely uncomfortable. She lost all remaining motion in both hips and knees. Her ankles fused. More than a year later, in a delayed response, her jaw became involved.