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Mercies in disguise : a story of hope, a family's genetic destiny, and the science that rescued them / Gina Kolata.

by Kolata, Gina Bari, 1948- author.

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New York : St. Martin's Press, 2017.

Baxley family -- Health.

Medical genetics.

Genetic disorders.

Genetic screening -- Moral and ethical aspects.

9781250064349 (hardcover) :

1250064341 (hardcover)

viii, 262 pages ; 22 cm

Part I: A disease. The prophecy ; "No goddamn bastard on earth has ever seen a disease like this thing" ; Revelation ; An uncertain inheritance ; Truth like science fiction ; Birthright ; Insomnia ; Naming the problem ; No return ; Tested -- Part II: Amanda Baxley: the next generation. A life transformed ; Options ; A foreign land ; The envelope ; Of two minds ; A unique way ; "We have no other options" ; Prescription fertility ; New lives ; Carrying forth.

The phone rings: the doctor has the results. "Are you ready Amanda?" The two people Amanda Baxley loves the most had begged her not to be tested. 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 science journalist and bestselling author Gina Kolata tells the story of the Baxleys, an upstanding family in a small town in South Carolina. Some family members were doctors; still, they are baffled by 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. Mercies in Disguise tells 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.--

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