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Genetic Linkage

The Forever Fix is Published! A Short Reader’s Guide

Great display at Albany Barnes + Noble
Reports are trickling in as people read my new book, The Forever Fix: Gene Therapy and the Boy Who Saved It (St. Martin's Press). It’s been amazing to hear the emotional ups and downs that accompany the experience, taking me back to how I felt writing the book.

For months, the words poured out, seemingly out of my control. I’d interview parents and researchers, usually late in the day, and be unable to sleep, immersed in their stories. Then early the next morning, the information would come flying out onto my screen, sometimes faster than I could type. And then the stories began connecting, usually through shared researchers, sometimes (end of Chapter 11) when the “characters” actually met in person, and this most amazing project truly took on a life of its own.

The book opens with 8-year-old Corey Haas at the Philadelphia Zoo, just 4 days after gene therapy for his hereditary blindness. He shrieked, the sun hurting his eyes – for the first time, ever. His inspiring story unfolds against the backdrop of gene therapy experiments that either failed, or led to incremental improvement and stalling of disease rather than reversal. Those are the sad chapters, early in the book, the ones that require a box of Kleenex during my “book talk.”

But the mood rapidly reverses at chapter 16, when we meet the shaggy sheepdogs born with the same disease that Corey had, and who had gene therapy first. The happy dogs went on to live with either the researchers or the young patients whose vision they helped to save.

After the spirited dog tales the narrative returns to Corey, following him through the actual procedure on his first eye through his two-year follow-up. The book ends with a vision of gene therapy for a host of other, common conditions.

Enjoy the read! And let me know your thoughts. (rickilewis54@gmail.com)

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