Mercies in Disguise : a story of hope, a family's genetic destiny, and the science that rescued them by Gina Bari Kolata

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, acclaimed New York Times science reporter and bestselling author 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 in the tradition of the The Immortal Life of Henrietta Lacks, 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.

262 pages (March 2017)

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Mercies in Disguise Research Grant from the Creutzfeldt-Jakob Disease Foundation.

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Amanda's presentation at the  2016 Crutzfeldt-Jakob Disease 2016 Family Workshop:

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Title Read-alikes: The Family Gene by Joselin Linder; Against Medical Advice by James Patterson; Patient H.M. by Luke Dittrich; The Angel and the Assassin by Donna Jackson Nakazawa; The Breakthrough by Charles Graeber; Ghost Boy by Martin Pistorius; The Philadelphia Chromosome by Jessica Wapner; The Lost Family by Libby Copeland; Happiness by Heather Harpham; Chasing My Cure by David Fajgenbaum; My Wife Said You May Want to Marry Me by Jason B. Rosenthal; A Mind Unraveled by Kurt Eichenwald; and Sophie and the Rising Sun by Augusta Trobaugh.