I’m traveling to Washington, D.C. this morning for a CF Foundation Leadership Conference. En route, I’m reading Alex: Life of a Child, by NPR commentator and author Frank Deford. Alex died in 1980, at 8. She died on the second page of the book, calling out for help, in pain and unable to breathe. And so, reading this among strangers could turn sloppy. So far, Deford has ripped my heart out every page- and I’m on page 10. Yet his tribute to his child is so poignant.
There have been massive strides made in treatment and life expectancy since Alex died, but nearly half of children with CF (45 percent) will not make it to adulthood. The median age for survival is 38. That is too low, in my opinion. I want to leave this conference with knowledge, and hope for my son.
I’ll be writing about the things I learn here.