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.-- Part I: A Disease. The Prophecy -- No Goddamn Bastard On Earth Has Ever Seen A Disease Like This Thing -- Revelation -- An Uncertain Inheritance -- Truth Like Science Fiction -- Birthright -- Insomnia -- Naming The Problem -- No Return -- Tested -- Part Ii: Amanda Baxley: The Next Generation. A Life Transformed -- Options -- A Foreign Land -- The Envelope -- Of Two Minds -- A Unique Way -- We Have No Other Options -- Prescription Fertility ; New Lives -- Carrying Forth. Gina Kolata. Includes Index. Includes Bibliographical References And Index.

"[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.

"[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. "...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 "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."-- Provided by publisher The phone rings: the doctor has the results. "Are you ready Amanda?" The two people Amanda Baxley loves the most had begged her not to be tested. 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 science journalist and bestselling author Gina Kolata tells the story of the Baxleys, an upstanding family in a small town in South Carolina. Some family members were doctors; still, they are baffled by 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. Mercies in Disguise tells 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.-- Provided by publisher Part I. A disease Prologue the prophecy "No goddamn bastard on earth has ever seen a disease like this thing" Revelation An uncertain inheritance Truth like science fiction Birthright Insomnia Naming the problem No return Tested Part II. Amanda Baxley: the next generation A life transformed Options A foreign land The envelope Of two minds A unique way "We have no other options" Prescription fertility New lives Carrying forth Epilogue.