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The Forever Fix: Gene Therapy and the Boy Who Saved It

por Ricki Lewis

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381649,366 (3.83)2
Fascinating narrative science that explores the next frontier in medicine and genetics through the very personal prism of the children and families gene therapy has touched. Eight-year-old Corey Haas was nearly blind from a hereditary disorder when his sight was restored through a delicate procedure that made medical history. Like something from a science fiction novel, doctors carefully introduced viruses bearing healing genes into Corey's eyes--a few days later, Corey could see, his sight restored by gene therapy. THE FOREVER FIX is the first book to tell the fascinating story of gene therapy: how it works, the science behind it, how patients (mostly children) have been helped and harmed, and how scientists learned from each trial to get one step closer to its immense promise, the promise of a "forever fix," - a cure that, by fixing problems at their genetic root, does not need further surgery or medication. Told through the voices of the children and families who have been the inspiration, experimental subjects, and successes of genetic science, Ricki Lewis' THE FOREVER FIX is compelling and engaging narrative science that explores the future of medicine as well as the families and scientists who are breaking new ground every day.… (más)
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    La vida inmortal de Henrietta Lacks por Rebecca Skloot (krazy4katz)
    krazy4katz: Both of these books humanize the process of medical discovery and the experiences of the patients. Although the authors have somewhat different backgrounds — Rebecca Skloot is a journalist with an undergraduate degree in biology, whereas Rikki Lewis has a PhD in genetics — I think the discussion of the scientific issues and the ethical issues regarding informed consent would appeal to the same readers.… (más)
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*Please note I won this via Goodreads Giveaways.*

This book is really well written. Being that it deals with gene therapy, it has a lot of scientific background in it. I've taken biology a few times. Once in high school, once when getting my BA, and once when going back to school to get an associate's degree to be able to do a work exchange program. I took it so many times not because I didn't get it, but because it is easiest science to digest, IMO. So. I learned multiple times over about brain body connections, proteins, DNA, axons, neurons, etc. All of which helped me in reading this book.

Although, I will say, that this is written in such a way that even if you don't have much scientific background, it's still easy enough to understand.

I honestly thought this would be more of a third party memoir, about Corey, the boy who's treatment "saved" gene therapy. But it doesn't focus on him nearly as much as I thought it would. Instead it's more of a combination of short chapters on a variety of people and the disorders they live with, and some of them, ultimately die from.

As easy as this was to read, I do have to admit that I was less invested in Corey's story by the end. I skimmed over the last few pages of the book. He still had a way to go in his treatment from the sound of things, since they only did the gene therapy on one eye, so it would be interesting to find out where he is at in that process these days.

Even though this was less memoir and more scientific than I was hoping, it's still a great read. ( )
  Melissalovesreading | Sep 30, 2018 |
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Fascinating narrative science that explores the next frontier in medicine and genetics through the very personal prism of the children and families gene therapy has touched. Eight-year-old Corey Haas was nearly blind from a hereditary disorder when his sight was restored through a delicate procedure that made medical history. Like something from a science fiction novel, doctors carefully introduced viruses bearing healing genes into Corey's eyes--a few days later, Corey could see, his sight restored by gene therapy. THE FOREVER FIX is the first book to tell the fascinating story of gene therapy: how it works, the science behind it, how patients (mostly children) have been helped and harmed, and how scientists learned from each trial to get one step closer to its immense promise, the promise of a "forever fix," - a cure that, by fixing problems at their genetic root, does not need further surgery or medication. Told through the voices of the children and families who have been the inspiration, experimental subjects, and successes of genetic science, Ricki Lewis' THE FOREVER FIX is compelling and engaging narrative science that explores the future of medicine as well as the families and scientists who are breaking new ground every day.

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