How “The Forever Fix: Gene Therapy and the Boy Who Saved It” Wrote Itself

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Category: Gene Therapy Books

Published on Thursday, 17 May 2012 06:44

Written by Ricki Lewis

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When I met smiling, 9-year-old Corey Haas on a dazzling Saturday morning in early December, 2009, I knew that the time had finally arrived to write a book about gene therapy for the general public. St. Martin’s Press published “The Forever Fix: Gene Therapy and the Boy Who Saved It,” in March, 2012. It was a long time coming – as was the field of gene therapy itself.

I’d been writing about gene therapy since the beginning. In September 1990, at the NIH, 4-year-old Ashi DeSilva received her own altered white blood cells to treat ADA deficiency. Two other Septembers form the high and low points of my book: Corey’s amazing ability to see at the Philadelphia zoo, four days after gene therapy for Leber congenital amaurosis type 2 in 2008, and 18-year-old Jesse Gelsinger’s death, four days after his gene therapy to treat ornithine transcarbamylase deficiency, in the same city in 1999.

Read more: How “The Forever Fix: Gene Therapy and the Boy Who Saved It” Wrote Itself