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Mercies in Disguise by Gina Kolata

Mercies in Disguise

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

by Gina Kolata
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  • First Published:
  • Mar 21, 2017, 272 pages
  • Paperback:
  • Apr 2018, 272 pages
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There are currently 39 reader reviews for Mercies in Disguise
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Power Reviewer
Carol T. (Ankeny, IA)

Mercies and opportunities
Well-written, informative, well-developed characters. I found myself sad to see the book end. I will look for more books by Kolata.
Power Reviewer
Barbara O. (Maryland Heights, MO)

Outstanding and Inspirational!
I devoured this book in less than a day. The author, Gina Kolata, does a masterful job introducing the reader to a little known genetically inherited disease with no cure. The story introduces us to a small town Southern family giving GSS a "real" face. You will love and admire these people as you follow their story and their quest to diagnose the illness that has manifested itself in the family's patriarch. The resultant questions and the individual decisions and impact on each family member keep you engaged and emotionally invested in their story. I cannot say enough about the dignity and courage of this family as they make their decisions once they learn the identity of this disease and it's physical impact on their loved ones. I was left wondering, what would I do? It's a beautiful story and hopeful despite this disease's inevitable physical impact.
Maribeth R. (Indianapolis, IN)

What would your decision be?
What would you do if you knew that a genetically-transmitted, debilitating neuromuscular disease was lurking in your family AND you had the opportunity to undergo testing to discover if the gene resided inside you? And if you learned that you carried the gene, what accommodations would you make to your life in preparation for what lies in your future? Kolata tells the story of an endearing family who faced the consequences of such decisions. Unlike the fictionalized O'Briens (Inside the O'Briens by Lisa Genova), the Baxley family members are real and will touch your heart. This short volume lays bare what we face in the medical world where we can now learn whether some diseases are likely to touch us because of our genes and not because of our lifestyle. Do you want to know whether you have the probability of developing Alzheimer's, Parkinson's, or Huntington's, and if you find out, what are the consequences that might occur? Loss of insurance, loss of job, a change in your attitude as to how you want to live your life - what do we want to know, and how can we determine if we should know our status, even if the test is easily accessible?

This book won't answer all those questions, but it should be a discussion starter for all of us as we face the expanding ability of medicine to answer questions that may be better unasked. This book will stimulate your thinking and will make you grieve for the family members who must face uncertainty (and certainty) in their futures. You won't be the same once you've come to know the Baxleys.
Lisa G. (Wheeling, IL)

Mercies in Disguise
This book is not for everyone. It is rather scientific and not everyone's cup of tea. I read it in one sitting since it hit home for me on many levels, recently losing a loved one to a neurological disease and having a close family member go through the same embryo screening procedures at the same lab because of a different genetic condition. I find medical research extremely interesting and the author presented it in a way that kept my interest. I don't think most book groups would find this book a good fit although mine loved The Immortal Life of Henrietta Lacks and this reminded me of that book.. The book brought up the ethical issue of wanting to know if you have a fatal genetic disease or not and how different family members made different choices.
Dawn C. (Meridian, ID)

Mercies in Disguise by Gina Kolata
Th Baxley family has a history of a neurological disease similar to Alzheimer's and Parkinson's diseases. Having lost a grandfather and now a father to this peculiar disease, two brothers who are doctors are looking for a reason for the disease and a possible cure. Other scientists are also searching for a cure. What if they find a gene that can be found with a simple test? Will Amanda be willing to find out if she has the gene that will potentially kill her? What would you do? These are questions faced by the family.

I like the chapters that discuss the family and you get to know them on a personal level. The chapters that explain the science of the disease and what they are doing to eradicate the disease are also very informative. All in all, what would I do is the prominent question here.
Susan B. (Rutledge, MO)

heartbreaking, interesting
This was a compelling read that definitely kept me turning pages. It was also heartbreaking in many ways, due to the nature of the disease it portrays and the lack of a cure. I was surprised at how strong my opinions were about the choices the different people in the book made: about getting tested or not, and having children or not. So I learned something about myself as well. Recommended to folks interested in genetics, health and medicine, and ethics.
Amy M. (Southlake, TX)

Mercies in Disguise
When the Baxley family realizes they have a genetic disorder, GSS, that results in the death of many family members, the younger Baxley's decide not to wait and see if they have the mutation that could be passed on to their children. What would you do? Would you live your life not knowing if you would die from this disease and maybe pass it on to your children, or be tested and plan the rest of your life? This book tells about Amanda's decision to plan her life, coupled with the personal family touch, gave the reader much to contemplate. Medical studies were written in such a way as to give the reader information they could understand. I enjoyed this book a lot.
Kate G. (Bronx, NY)

Decisions, decisions....
Medical science has advanced so rapidly over the past 40 years, that patients are being placed in situations which place the burden of their healthcare squarely on them. Some members of the Baxley family have died due to a neurological disorder which resembled a combination of Parkinson's and Alzheimer's. Several of them had become physicians and studied and researched while several scientists were also describing and discovering what this disorder could be. Science and family intersect through Amanda Baxley who has lost her grandfather to the disease and is watching her father and uncle succumb. She must decide whether she wants to know her future and if so, will she risk passing on the disorder to her hypothetical unborn children? The story is compelling as Amanda's story unfolds. Most of the scientific information was very familiar to me, except for the disease itself and I found it a satisfactory, though not an enjoyable read. Gina Kolata is a gifted science writer and storyteller and while I think it provides much for book groups to talk about, the subject matter may be difficult for some to handle.

Beyond the Book:
  Genetic Testing

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