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


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 in the tradition of the The Immortal Life of Henrietta Lacks, 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.

Title:Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them
Format Type:Hardcover
Number of Pages:272 pages
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    Mercies in Disguise: A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them Reviews

  • Diane S ?
    Nov 17, 2016

    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 Par...

  • Barbara
    Feb 25, 2017

    One by one, members of the Baxley family of Hartsville, South Carolina - respected members of the devoutly Christian community - were struck by a devastating neurodegenerative illness. The first victi...

  • Jeanette
    Apr 02, 2017

    The first 2/3rds of the book was a 5 star. The family story is from the inside perspective and in day to day, year to year as it happened in sequence- reactive reality. Utter bravery in telling the en...

  • Marialyce
    May 04, 2017

    4.5 stars. This was a tragic yet amazing story of a family who learns eventually that a neurological disease is destroying their family. This disease relatively unheard of, is transmitted genetically ...

  • Loring Wirbel
    Feb 26, 2017

    Those pesky prions have needed a popular-science storytelling for quite some time. Gina Kolata, arguably the best science and medicine writer at The New York Times, would seem just the person to do it...

  • David
    Feb 12, 2017

    ICY (like me) MI: The title “Mercies in Disguise” refers to the song “Blessings” by popular Christian singer-song writer Laura Story. The song won a Grammy in 2012 and topped the Billboard Chr...

  • Eve
    Mar 31, 2017

    3.7 stars. This non-fiction about the way one family discovers that they have an incurable fatal genetic disease and the choices that each one makes is a very interesting and quick read. The human sto...

  • Kate
    Nov 22, 2016

    I received an ARC from in exchange for an honest review. A variation of this review appears on their site. Decisions, decisions.... Medical science has advanced so rapidly over the past...

  • Mary
    Jun 21, 2017

    Mercies in Disguise tells the story of Gerstmann Straussler Scheinker (GSS) syndrome. Written by a science writer, Gina Kolata, she describes the discovery of this rare neurological disease that is pa...

  • Erin Cataldi
    May 15, 2017

    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 d...