New York Times science reporter Gina Kolata follows a family through genetic illness and encounters one courageous daughter who decides her fate shall no longer be decided by a genetic flaw. Please join the author and fellow science journalist Nancy Snyderman for a discussion of often wrenching questions around genetics, illness, and modern medicine.
The phone rings. The doctor from California is on the line. “Are you ready Amanda?” The two people Amanda Baxley loves the most had begged her not to be tested—at least, not now. But she had to find out. If your family carried a mutated gene that foretold a brutal illness and you were offered the chance to find out if you’d inherited it, would you do it? Would you walk toward the problem, bravely accepting whatever answer came your way? Or would you avoid the potential bad news as long as possible?
In Mercies in Disguise, Gina Kolata 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, Mercies in Disguise 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.
Gina Kolata is a writer and medical reporter for The New York Times. She has previously written several books, including Flu, and edited collections of popular science writing. Nancy Snyderman is a physician and long-time medical correspondent for ABC News; she is the author, among other books, of Diet Myths that Keep Us Fat, and Girl in the Mirror: Mothers and Daughters in the Years of Adolescence.