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Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them (2017)

de Gina Kolata

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1096249,581 (3.96)4
"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. "--… (més)
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» Mira també 4 mencions

Es mostren 1-5 de 6 (següent | mostra-les totes)
Really enjoyed. Kolata builds the story slowly, investing you in the family, making you care about the outcome. The science is handled clearly and the struggles all dealt with sensitively ( )
  cspiwak | Mar 6, 2024 |
3.75 ( )
  Moshepit20 | Oct 29, 2023 |
Kolata, Gina. Mercies in Disguise: A Story of Hope, A Family's Genetic Destiny, and the Science that Rescued Them. 7 CDs. unabridged. 8.5hrs. Recorded Books. ISBN 9781501945366.

Narrative nonfiction doesn't get much better than this. Gina Kolata, a New York Times science reporter, brilliantly brings a family's harrowing medical crisis to life and tells the story of how a brave young daughter decides to reshape her future and put an end to the genetic disease that had been killing off her family for generations. Kolata researches the history of the mysterious disease while concurrently telling the story of a loving family in a small town that appears to be harangued by bad luck. When the patriarch of the family dies under mysterious circumstances, his sons take matters into their own hands, trying to track down the mysterious disease and piece together their family tree to see what the future may hold in store for them. Compellingly narrated by Andrea Gallo who doesn't shy away from hard medical pronunciations and foreign names. Her soft, yet endearing voice provides a wonderful reassuring and authoritative voice. A wonderful read, even for those not interested in medical or scientific nonfiction. - Erin Cataldi, Johnson Co. Public Library, Franklin, IN ( )
1 vota ecataldi | May 15, 2017 |
I received a free advance review e-copy of this book and have chosen of my own free will to post a review. Wow!! At times this story is a real tearjerker, a true story of a family’s despair, courage, and hope that I found very difficult to put down. This is a story of hope as a family deals with a rare, incurable, and fatal genetically inherited neurologic disease, a mutant prion disease. The author gives the reader enough basic information on prions and prion related diseases in order to understand what happens but without an extreme emphasis on technical detail. Gina Kolata writes with a great deal of compassion and empathy as she tells the story of this family as they deal with unexpected and rapid debilitation, disability, death, questions related to genetic screening, IVF, etc. This is an extremely well written true story with a very real personal and human element. The author includes just enough technical and scientific background for understanding. This is a very interesting book and I now have a better understanding of prions and prion related diseases. ‘Mercies in Disguise’ is well worth the read and I look forward to reading more from Gina Kolata. ( )
1 vota iadam | Apr 5, 2017 |
An interesting examination of one family's reckoning with a devastating, but rare, genetic disease. In clear, precise prose, Kolata examines the ethical and psychological issues that arise when science and religion collide. The first part of the book is equally divided between the family and science, but the latter part deals almost exclusively with the family and the issues it must deal with. It is a compelling, but also rather harrowing read. ( )
  eachurch | Nov 22, 2016 |
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Gina Kolataautor primaritotes les edicionscalculat
Serrano, ErvinDissenyador de la cobertaautor secundarialgunes edicionsconfirmat
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The two most important days in your life are the day you were born and the day you find out why.

-- Mark Twain
What if the trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise?

-- "Blessings," by Laura Story
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To Amanda and the Baxley family
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New Guinea, 1957

They called it kuru -- "to be afraid" or to "shiver."
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"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. "--

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