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A Story of Hope, a Family's Genetic Destiny, and the Science That Rescued Them
by Gina Kolata
Book Reviewed by: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.
Excerpt
Mercies In Disguise
The phone rings. The California doctor is on the line. "Are you ready, Amanda?" her therapist asks.
Tim Baxley never even got the name of the woman who told him the story that set the horror in motion. It was a June evening in 1998 and Tim was at the end of the receiving line at a viewing the night before a funeral — his father's funeral.
Tim's father, Bill Baxley, had been a chemical engineer at a local packaging plant. Tall and imposing, with a stern and serious face, he had been a deacon in his church and head of the Sunday school program.
The Baxley family had lived in or near Hartsville, South Carolina, for generations. A town that, with its suburbs, comprises 21,000 people and 16 churches — eight of which are Baptist. It is a deeply Christian population in the heart of the Bible Belt.
The lure of the town, its magnetic appeal for the Baxley family and many others, is its sense of community. Residents cherish family life — ...
BookBrowse's reviewers recommend Mercies in Disguise for a broad audience but especially those interested in medicine and science:
If you liked The Immortal Life of Henrietta Lacks you will enjoy Mercies in Disguise (Sandra L). I would recommend it to anyone who likes medical detective stories (Carm D). I heartily recommend it especially to anyone who is interested in medicine or science (Viqui G). I highly recommend this book for the use of book club discussions, as it presents a timely and real world dilemma for discussion: such as, do we really want to know the perils of our future? (Emily C)...continued
Full Review
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(Reviewed by First Impressions Reviewers).
Dr. Abraham Verghese, author of New York Times bestseller, Cutting for Stone
Mercies in Disguise reads like a medical thriller; I simply couldn't stop once I began. Sylvia Nasar, author of A Beautiful Mind, winner of the National Book Critics Circle Award for Biography
[An] extraordinary medical mystery, scientific history and, above all, human drama. Once I started reading, I couldn't stop. Then, when I finished it, I couldn't stop thinking about the Baxleys and the choices they faced.Mercies in Disguise discusses the impact of a rare genetic disease on a South Carolina family.
Genetic testing's history dates back to the discovery of chromosomes – the part of the cell that contains the genes which control how a living thing grows – in the late 1800s. It was early in the 1900s that inherited diseases were first linked to chromosomes. In the 1950s, discoveries relating to the science of genetics allowed the development of tests for genetic conditions including Down syndrome, cystic fibrosis and some forms of muscular dystrophy. Advances in the field have led us to the point where genetic testing is available for over 2000 rare and common conditions, and is provided from over 500 ...
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