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

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

Написано Gina Kolata

Озвучено Andrea Gallo


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

Написано Gina Kolata

Озвучено Andrea Gallo

оценки:
3/5 (24 оценки)
Длина:
8 часов
Издатель:
Издано:
21 мар. 2017 г.
ISBN:
9781501946585
Формат:
Аудиокнига

Описание

New York Times science reporter Gina Kolata follows a family through genetic illness and one courageous daughter who decides her fate shall no longer be decided by a genetic flaw.

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 answer came? Or ignore it while you could?

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. Many of them were doctors, but still, they are struck down by an inscrutable illness. Finally, they discover the cause of the disease after a remarkable sequence of providential events.

Meanwhile, science, progressing for 50 years along a parallel track, handed the Baxleys a question - not a cure, but a blood test that would reveal who had the gene for the disease. Science offered another dilemma - fertility specialists had created a way to spare the children.

A work of narrative nonfiction in the tradition of the The Immortal Life of Henrietta Lacks, Mercies in Disguise tells the story of a family that took matters into its own hands when medicine could not help. It's a story of a family dealing with unspeakable tragedy without being driven apart. It is the story of a young woman - Amanda Baxley - who faced the future, determined to find a way to disrupt her destiny.

Издатель:
Издано:
21 мар. 2017 г.
ISBN:
9781501946585
Формат:
Аудиокнига

Об авторе

Gina Kolata is an award-winning senior writer for the New York Times. The winner of numerous writing awards, she has authored several books, including the bestselling Flu: The Story of the Great Influenza Pandemic of 1918 and the Search for the Virus that Caused It. Her latest book is Rethinking Thin: The New Science of Weight Loss—and the Myths and Realities of Dieting.


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  • (4/5)
    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
  • (5/5)
    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.
  • (4/5)
    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.
  • (4/5)
    Having a neurological disease is challenging, I live with one, but having a neurological disease that no one can diagnose, that has no treatment, no cure is terrifying. Having the symptoms of both Parkinson disease and Alzheimer, the inflicted slowly degenerate until death mercifully claims them. This is the disease confronting the Baxley family, a disease that has existed for generations but only when their father is inflicted do the two physician sons become aware of this fact. Setting out to find answers this is the story of a family unsure of their future, devastated by what has gone before.Eventually an answer will be found and a test form the gene necessary to activate this fatal disease and then in the younger generation the question becomes, does one take the test and live with the fear of a death sentence or does one live their life never knowing until or if they are afflicted. This is the dilemma the younger generation, including Amanda, now in her late twenties, her father dying, must decide. The book chronicles the discovery of this illness, the men behind it and the doctors who discover how to test for this very rare gene. These chapters are interspersed between chapters of the family. A wonderful family, whom one comes to know and care about, a family that has shared much happiness and much sadness. Although they all choose different paths, some of the decisions causing breaks in the family, they all come together in support, caring and a great deal of love and hope. The author does a wonderful job showing us the joy and heartbreak, following this family, chronicling their decisions, their doubts, their fears. That further sufferers of this or other neurological diseases may understand that they are so much more than what they are afflicted with, that life can still full, that making everyday count is perhaps bigger than the disease itself. I thank them for sharing their story with me, it was truly inspirational.ARC from bookbrowse and St. Martin publishers.Publishes in March, 2017