A little over five years ago, Alison and Doug Kirk held their 9-year-old daughter’s hand as she lay on a futon in their Nashville living room, told her they loved her, and watched her take her last breath.
The Kirks had known for a long time that their little girl, Caroline, would die. In her last weeks, she was under hospice care, lived off an oxygen machine, was fed through a tube, and spoke only in small murmurs. It was the normal course for a child born with Niemann-Pick, a terminal disease that gradually leads to the breakdown of the nervous system, brain and lungs.
What happened after Caroline’s death was anything but typical.