Mercies in Disguise

Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them
By Gina Kolata (2018)

If your family had a disease that caused significant illness or early death, would you want to find out if you carried the fatal gene?

This remarkable book follows the Baxley family of Hartsdale, South Carolina. It is a medical mystery, beautifully told by Gina. Kolata. The family harbors a mutant gene that causes a progressive neurological disease (GSS). There is science, there is genetics, there is medical ethics, there are questions of faith, and how individuals in their families can react to this life altering realities.

 In Mercies in Disguise, acclaimed New York Times science reporter tells the story of the Baxleys, an almost archetypal family in a small town in South Carolina. A proud and determined clan, many of them doctors, they are struck one by one with an inscrutable illness. They finally discover the cause of the disease after a remarkable sequence of events that many saw as providential. Meanwhile, science, progressing for a half a century along a parallel track, had handed the Baxleys a resolution―not a cure, but a blood test that would reveal who had the gene for the disease and who did not. And science would offer another dilemma―fertility specialists had created a way to spare the children through an expensive process.

A work of narrative nonfiction,     this is the story of a family that took matters into its own hands when the medical world abandoned them. It’s a story of a family that had to deal with unspeakable tragedy and yet did not allow it to tear them apart. And it is the story of a young woman―Amanda Baxley―who faced the future head on, determined to find a way to disrupt her family’s destiny.