Imagine watching your father die slowly from a degenerative neurological disease so rare that there is no cure. Imagine, then, coming to grips when you learn the disease is genetic and there is a good chance that you carry those genes, and will not only die from the disease but pass it along to your children. If you could take a simple blood test to reveal whether or not you have the genes, would you take it?
Part medical mystery, part family history and part medical history, Gina Kolata’s gripping Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science That Rescued Them tells the story of one small-town Southern family ravaged by a mysterious illness. The Baxley family of Hartsville, South Carolina, always felt they were special. They were even named the South Carolina Family of the Year in 1985 by former governor Richard Riley. Following family patriarch Bill Baxley’s death, they discovered their specialness arose not only from hard work and community respect but from carrying a rare disease that started to afflict almost every member of the family.
After watching her father die slowly from Gerstmann-Sträussler-Scheinker (GSS) disease, Amanda Baxley, Bill Baxley’s granddaughter, tests positive for this degenerative illness that is plaguing her family. In poignant detail, Kolata tells of Amanda’s fear, hope, strength and courage as she chooses to undergo preimplantation genetic diagnosis, a procedure in which embryos with the disease are discarded while a healthy one is implanted. As a result of this procedure, Amanda delivers twins not long after her father breathes his last breath, and she sees her children as a gift of life from her father.
Kolata’s book tells a riveting tale of fear and fierce determination in the face of an overwhelming medical situation that at first seems hopeless.