Mercies in Disguise
A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them
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- $11.99
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- $11.99
Publisher Description
"[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
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.
PUBLISHERS WEEKLY
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.