jeremiahstanley.comMusic by Ethan B. Norman
She has forcefully and earnestly battled osteogenesis imperfecta congenital, the most severe form of the rare genetic disorder, since birth. Think brittle bone disease mixed with scoliosis and melded with multiple gastro-intestinal complications. Bend and snap.
She has never placed one foot in front of the other. Instead, she awakes every day to a body buckled, bent and bound to a wheelchair. The medicinal marijuana, outlawed in the state of Florida, crowds out most of the pain. Some still slips through.
Most tormented with the severity of her disease don’t live half as long as she has managed. After 51 years of struggling beneath the crunch of the bone disease and suffering through more than 100 surgeries, Amy has deteriorated to the 3-foot-9, 53-pound mass of flesh and bone she carries today. That weight, hidden behind her protruding ligaments, barrel-shaped rib cage and twisted spine, all 53 pounds of it, can, in fact, hang heavily.
This is Amy.