Amy has forcefully and earnestly battled osteogenesis imperfecta congenital, the most severe form of the rare genetic bone disorder, since birth. Think brittle bone disease mixed with scoliosis and melded with multiple gastro-intestinal complications. Bend and snap.

Unlike other 3-year-olds who found themselves toddling and tottering this way and that, Amy never placed one foot in front of the other. She awakes each day to a body buckled, bent and bound to a wheelchair.

Most tormented with the severity of her disease don't live half as long as she has pressed on. After 51 years of struggling beneath the crunch of the bone disease and more than 100 surgeries, Amy has deteriorated to the 3-foot-9, 53-pound mass of flesh and bone she carries today. Those muscles, hidden behind her barrel-shaped rib cage and twisted spine, can, in fact, weigh heavily.

This Web site is a gallery of observations, a history of a patient, but, mostly, it is a collection of those remarkable slivers of life Amy experiences every day written as a four-part series.

Please begin with the links on the right, which will guide you through her story, part by part. Each segment is supplemented with notes directing you to external Web sites that were visited in the research process. Look for the multimedia slideshow presented with the first part. Read on.