Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them

A science reporter's account of a family, a genetic illness, and one courageous daughter who decides her fate shall no longer be decided by a genetic flaw. "A moving, suspenseful page-turner . . . Recalls two other classic tales of medical anthropology, Rebbeca Skloot's The Immortal Life of Henrietta Lacks and Anne Fadiman's The Spirit Catches You and You Fall Down." —The Washington Post 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 brutal illness and you could find out if you inherited it, would you do it? Would you confront it, accepting whatever the answer was? Or would you ignore it? In Mercies in Disguise, acclaimed New York Times reporter and bestselling author Gina Kolata tells the story of the Baxleys, an upstanding family in small-town South Carolina. Some family members were doctors; still, they are baffled by an inscrutable illness. Finally, after a remarkable sequence of providential events, they discover the cause of the disease. Science, meanwhile, progressing for fifty years along a parallel track, handed the Baxleys not a cure but the answer to a question—a blood test that would reveal who had the gene for the disease—and a dilemma: fertility specialists had created a way to spare the children. Mercies in Disguise tells the story of a family who took matters into their own hands when medicine could not help. It's a story of a family who must deal with unspeakable tragedy without being driven apart. And it's the story of a young woman—Amanda Baxley—who faced the future, determined to find a way to disrupt her destiny. "[Kolata] is a gifted storyteller. Her account of the Baxleys . . . is both engrossing and distressing . . . Kolata's book raises crucial questions about knowledge that can be both vital and fatal, both pallative and dangerous." —Andrew Solomon, The New York Review of Books

© 2024 St. Martin's Press (E-raamat): 9781250123992

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E-raamat: 4. juuni 2024