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Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them, by Gina Kolata
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"...a moving, suspenseful page-turner that's likely to become a classic of medical storytelling." ―The Washington Post
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 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, 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.
- Sales Rank: #20083 in Books
- Brand: St Martin s Press
- Published on: 2017-03-21
- Released on: 2017-03-21
- Original language: English
- Dimensions: 216.66" h x 1.06" w x 5.69" l, .0 pounds
- Binding: Hardcover
- 272 pages
- St Martin s Press
Review
"[Kolata's] book recalls two other classic tales of medical anthropology, Rebecca Skloot’s The Immortal Life of Henrietta Lacks and Anne Fadiman’s The Spirit Catches You and You Fall Down.” ―The Washington Post
"Mercies in Disguise is the true story of one family’s struggle with a rare and deadly inherited illness. Gina Kolata’s prose brings to life the science as well as the maverick scientists who solve the riddle. When a blood test can now predict who is destined to be an invalid while still young, and who is spared, we agonize with family members over whether we’d want such knowledge. Mercies in Disguise reads like a medical thriller; I simply couldn’t stop once I began.” ―Dr. Abraham Verghese, author of the New York Times bestseller Cutting for Stone
"Mercies in Disguise is an extraordinary medical mystery, scientific history and, above all, human drama. Once I started reading, I couldn't stop. Then, when I finished it, I couldn't stop thinking about the Baxleys and the choices they faced." ―Sylvia Nasar, author of A Beautiful Mind, winner of the National Book Critics Circle Award for Biography
"Absorbing... the interweaving tales of science, family, and medical ethics make for a compelling read." ―Library Journal
"Gripping...Kolata's book reads like a medical thriller." ―Publishers Weekly
"A story that pits hope against fate, courage against uncertainty... Kolata delivers an inspiring chronicle of a remarkable family, medical advances, and redefining destiny." ―Booklist
About the Author
GINA KOLATA (M.A.) is a writer and medical reporter for The New York Times. She has previously written several books, including Flu, and edited collections of popular science writing. Ms. Kolata lives with her husband in Princeton, New Jersey.
Most helpful customer reviews
7 of 7 people found the following review helpful.
MUST READ!!!
By Jamie
If I could rate this book a 10, I would. This is honestly the best book I have read in quite sometime. It is an incredibly personal and honest look into a family's life dealing with a devastating and terminal hereditary disease that few doctors know anything about. And how their journey has led them to do anything and everything they can to fight back, no matter how diffult or controversial it may be.
3 of 3 people found the following review helpful.
A Southern Familys Struggle With An Incurable Condition
By Susan Kornblut
I enjoyed this book vey much it was a quick read and was of interest to me as a former Medical Lab tech.It is the story of how a genetic anomaly passed on for many generations affected a small town family in the South.It is also the struggle of how one young woman dealt with this disease .A very good and absorbing medical mystery.
0 of 0 people found the following review helpful.
Not terribly merciful
By Paper or Kindle
This is a fascinating book, but the title and subtitle are misleading. There is no mercy in the inherited illness that runs through a family, and there is no rescue or cure in sight. Despite an interesting history of prion diseases and the dedicated researchers who study them, at the end of the day there is only the fact that a test can let someone know if they are a carrier. Amanda is a young woman who has the courage to get tested, then has to live with the knowledge that she is doomed to a hideous and early death. Despite this, she goes on to get married and makes the brave decision to have children, but only through a complicated procedure that will discard fertilized eggs that carry the defective gene. Meanwhile, her devout sister decides not to get tested and to have children without knowing their ultimate fate. Time will tell if this painful and disfiguring illness will strike in the coming generation.
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