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


Overview -

" 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.  Read more...


 
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More About Mercies in Disguise by Gina Kolata
 
 
 
Overview

" 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.


 
Details
  • ISBN-13: 9781250064349
  • ISBN-10: 1250064341
  • Publisher: St. Martin's Press
  • Publish Date: March 2017
  • Page Count: 272
  • Dimensions: 8.1 x 5.9 x 1.1 inches
  • Shipping Weight: 0.8 pounds


Related Categories

Books > Health & Fitness > Diseases - Genetic
Books > Medical > Genetics
Books > Medical > Ethics

 
BookPage Reviews

An infected family tree

Imagine watching your father die slowly from a degenerative neurological disease so rare that there is no cure. Imagine, then, coming to grips when you learn the disease is genetic and there is a good chance that you carry those genes, and will not only die from the disease but pass it along to your children. If you could take a simple blood test to reveal whether or not you have the genes, would you take it?

Part medical mystery, part family history and part medical history, Gina Kolata’s gripping Mercies in Disguise: A Story of Hope, a Family’s Genetic Destiny, and the Science That Rescued Them tells the story of one small-town Southern family ravaged by a mysterious illness. The Baxley family of Hartsville, South Carolina, always felt they were special. They were even named the South Carolina Family of the Year in 1985 by former governor Richard Riley. Following family patriarch Bill Baxley’s death, they discovered their specialness arose not only from hard work and community respect but from carrying a rare disease that started to afflict almost every member of the family.

After watching her father die slowly from Gerstmann-­Sträussler-Scheinker (GSS) disease, Amanda Baxley, Bill Baxley’s granddaughter, tests positive for this degenerative illness that is plaguing her family. In poignant detail, Kolata tells of Amanda’s fear, hope, strength and courage as she chooses to undergo preimplantation genetic diagnosis, a procedure in which embryos with the disease are discarded while a healthy one is implanted. As a result of this procedure, Amanda delivers twins not long after her father breathes his last breath, and she sees her children as a gift of life from her father.

Kolata’s book tells a riveting tale of fear and fierce determination in the face of an overwhelming medical situation that at first seems hopeless.

This article was originally published in the April 2017 issue of BookPage. Download the entire issue for the Kindle or Nook.

 
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