Mercies in Disguise: A Story of Hope, a Familys Genetic Destiny, and the Science That Rescued Them by Gina KolataThe 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 youd 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. Its 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 familys destiny.
‘Mercies in Disguise’
Take the ordinary difficulties of getting through the day and add, for example, loss of motor function, a deteriorating memory or a blocked vein in the liver and a body so swollen with lymphatic fluid that clothes and shoes no longer fit. Now throw in lack of a diagnosis and dwindling financial resources. The unexplained disease brings shame, denial and sometimes blame. Along the way patients ask: Why me? Such knowledge might lead to a treatment for, or at least, better management of the condition. The narratives of families suffering from such diseases traffic in these questions and a roiling stew of emotions: confusion, anger, determination, resilience, love, and moments of profound despair and hope. I confess that my inner geneticist chafes at this language — by and large, we all have the same 22, or so genes.
Editorial Reviews. Review. "[Kolata's] book recalls two other classic tales of medical GINA KOLATA (M.A.) is a writer and medical reporter for The New York .
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Gina Kolata Interview
The two people Amanda Baxley loves the most begged her not to be tested — at least not now. We are hurting so much already. But she had always been so stubborn, so sure of what she wanted, so able to push past trepidation. And she was driven by the impossible expectations of what this day would bring; she had to know her future in order to control it. If she had the mutated gene — a forecast of a horrifying and fatal illness, one without treatment or cure, passed down in her family from generation to generation — she vowed it would stop with her.