By John Duff
Turns out it is possible to find the Forever Fix – it’s at the local library. Or it will be when I return my copy. I’ve been raving recently to anyone who’ll listen (and probably some who don’t) about a book I found on genetic therapies called The Forever Fix: Gene Therapy and the Boy Who Saved It by Ricki Lewis. Finally, an accessible guide to this journey we find ourselves on. To be completely honest, in recent doctor visits I’ve often found my mind drifting as viral vectors, protein transport, and Fig4 mutations are discussed.
It isn’t easy as a layman to keep up with those conversations even when it is your daughter that they’re talking about. Thank goodness my wife Jocelyn with her medical training listens and understands the potential of it all. Still I work hard to try to interpret every word but when I look to Talia who is sitting right next to me in these appointments often bored, I can’t help but get distracted and play with her which is good for us both. I treasure my role as her playmate during these times. Moments of silliness that keep my girl smiling no matter how many offices we visit.
In any case, ignorant no more. The Forever Fix is my entry point into what we’re up against. Readable, understandable, fascinating, heartbreaking, uplifting, at times even funny.
It may not exactly be the beach read you’ve been looking for, but if you’re curious to understand more this book describes the medical journey of families who’ve pioneered this path we find ourselves on.
Time to write the next chapter.