Tuesday, March 2, 2010
I had the incredible good fortune of being interviewed by Bob Edwards, someone I have long admired. We talked for an hour about my new book. Below is a piece that The Bob Edwards Show put on its blog the day the radio show aired.
Laurie Strongin and her husband Allen Goldberg are not the type of people who give up easily. When they learned their child Henry had a fatal genetic disease called Fanconi anemia, they quickly decided to do everything they could to remove the word “fatal” from that diagnosis. Their efforts were unsuccessful, ultimately, but what they did succeed in was removing the word “disease” from Henry’s life. The book Saving Henry tells a remarkable story of a child who never thought of himself as sick and a family who decided to pack as much living as they could into Henry’s short life.
Parents will find the book simultaneously rewarding and difficult. Strongin writes so well about her happy, precocious first-born son — detailing his favorite things, recounting family vacations — that we begin to forget that word “disease” too. The inevitable result of Fanconi anemia comes as a shock, even in print. Strongin says she thinks of Saving Henry as a hopeful book, and I agree. There’s a lesson in it about eating dessert first, putting fun ahead of chores, and learning not to sweat the small stuff.
Goldberg continues to write letters to his son at this blog. And he and Strongin decided to share Henry’s positive outlook on long-term hospitalization through the foundation Hope for Henry, which brings a little joy to children with life threatening illnesses.