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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

by Gina Kolata
 

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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

Overview

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.

Editorial Reviews

Publishers Weekly
01/23/2017
Kolata (Flu), a science journalist for the New York Times, shares the gripping story of how one South Carolina family has dealt with Gerstmann-Straussler-Scheinker disease, a deadly and untreatable genetic illness. Her wonderful presentation of cutting-edge biomedical research offers insight into some of the scientists who carry it out while exploring the struggles and unhappiness of patients and their families. Kolata also examines a host of intractable ethical issues associated with the disease: Should individuals be tested to determine whether, sometime in the future, they will fall victim to the flaw in their genome, knowing that no palliative treatment is possible? Should embryos be genetically tested and those with the variant gene discarded? The family Kolata follows is devoutly Southern Baptist, which provides the opportunity to consider the myriad ways religion and science interact in such complex situations. Observing the familial interactions and the manner by which different individuals process the same information proves fascinating. The book’s only real flaw derives from the overwrought manner in which every action, whether mundane or medically critical, gets raised to crisis level. Kolata’s book reads like a medical thriller and readers will be caught up in the lives of the protagonists. Agent: Katinka Matson, Brockman Inc. (Apr.)
From the Publisher

"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

Library Journal
12/01/2016
Kuru, an incurable genetic disease native to Papua New Guinea, finds its way to the Baxleys, a conservative Christian family of doctors in small-town South Carolina who battle kuru—a degenerative and deadly mix of Parkinson's and Alzheimer's—while trying to uncover its mysterious origin and possibly escape its fate. New York Times science and medicine reporter Kolata (Rethinking Thin: The New Science of Weight Loss—and the Myths and Realities of Dieting) dedicates the absorbing first half of this book to the parallel accounts of doctors investigating the mystifying disease (neurologist Stanley Prusiner and physician Daniel Gajdusek would both win Nobel Prizes for their work) and the Baxley family's struggle to understand and cope with its devastating effects. The narrative weakens in the second half, when it narrows its focus to Amanda Baxley, whose determination to have children but not pass on the deadly gene leads to a plodding medical journey. But the interweaving tales of science, family, and medical ethics make for a compelling read. VERDICT Though at times the book adopts the tone of a Hallmark made-for-TV movie, its hopeful, struggle-against-the-odds story will find a library audience. [See Prepub Alert, 9/19/16.]—Chad Comello, Morton Grove P.L., IL
Kirkus Reviews
2017-01-24
A family's legacy is haunted by a torturous genetic disease.New York Times science reporter Kolata (Rethinking Thin: The New Science of Weight Loss—the Myths and Realities of Dieting, 2007, etc.) adroitly profiles the plight of the close-knit, rural South Carolina-based Baxley family, hounded by the presence of a "rare, anomalous" neurodegenerative disease. "Abrupt in its onset and unswerving in its course," the incurable, inherited, and ultimately fatal disease commingles characteristics from both Alzheimer's and Parkinson's diseases. Inherited via genetic mutations, the malady renders those afflicted with initial dizziness, followed by severe tremors, facial freezing, mute dementia, and death. Tim Baxley and his three brothers lost their father, Bill, to the disease in the late 1990s after a frustrating cycle of neurologist visits and futile personal fact-finding missions. Throughout the chronicle of the Baxleys and how they scoured their family tree searching for answers, Kolata deftly weaves in the history of kuru disease. She explores the funereal endocannibalistic rituals of Papua New Guinea's Fore people as both the source of its origins and its outward transmission. American doctor Daniel Carleton Gajdusek performed dogged research on kuru, and he received the Nobel Prize for his work in 1976. Another distinguished researcher, Stanley Prusiner, also won the Nobel in 1997 for his work with associated "mad cow disease," just as, several years later, Baxley family members began to succumb to kuru one by one. Kolata puts a human face on this incurable, agonizing disease with an affecting combination of neuroscience and anguished anecdotes centered on a loving family at the mercy of an intricate congenital infection. In the concluding section, the story becomes optimistic as the family's next generation agonizes over the decision to test for the gene mutation but finds hope through a risky, radical profiling procedure that allows for a prenatal diagnosis of at-risk human embryos. The panic is palpable in Kolata's moving depiction of a mysterious disease and its frightening consequences.

Product Details

ISBN-13:
9781250064349
Publisher:
St. Martin's Press
Publication date:
03/21/2017
Pages:
272
Sales rank:
109,224
Product dimensions:
5.50(w) x 8.25(h) x (d)

Meet 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.