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On a bright September Sunday in 2008, 8-year-old Corey Haas walked up the pathway to the Philadelphia zoo holding his parents' hands, looked up, and screamed. It was the first time he'd seen the sun.
Four days earlier, Corey had undergone gene therapy for hereditary blindness at Children's Hospital of Philadelphia. An eye surgeon had gently placed billions of viruses bearing healing genes just beneath the rods and cones of Corey's left eye. Now, at the zoo, seeing the sun hurt.
Corey's suddenly restored vision marked a renaissance for gene therapy, a biotechnology sadly sidelined nine years earlier when an 18-year-old died in a similar experiment in the same city, also in just four days.
The Forever Fix tells the riveting saga of gene therapy: how it works, the science behind it, how young patients have been helped and harmed, and how researchers learned from each trial to inch one step closer to its immense promise, the promise of a "forever fix" - a cure that, by correcting a problem at its genetic roots, doesn't need further treatment.
Corey's inspiring true story unfolds against the backdrop of other children receiving gene therapy since the field was born in 1990, and those looking ahead to it in the coming months. The treatments pioneered on their rare diseases will reverberate to many more common illnesses. The compelling voices of the children, families, researchers, and physicians at the forefront of this biotechnology relate the ups and downs that have led to its recent success, and looming acceptance. And no one has told these intertwining stories - until now.
The Forever Fix, dedicated to the children of gene therapy, is a celebration of science, medicine, parent activism, and most important of all, hope.
RICKI LEWIS is a Ph.D. geneticist, journalist, professor and genetic counselor. The author of one of the most widely used college textbooks in the field (Human Genetics: Concepts and Applications, now in it's 10th edition), she has also written hundreds of articles for trade and specialized magazines, including Nature, Discover, and The Scientist. She is a hospice volunteer and frequent public speaker. Ricki lives near Schenectady, NY, and as much as possible in Martha's Vineyard.
Follow Ricki Lewis on Twitter (@rickilewis), on her blog Genetic Linkage (www.rickilewis.com), and at https/www.facebook.com/rickilewisauthor.