just wanted to share

I always feel inspired when I read or hear about the relatively normal lives of teens and young adults with complex heart defects. When we received Heidi's diagnosis (five long years ago now), we were told that statistically, 40% of the children with her condition (hypoplastic left heart syndrome) live to age 5. While the survival rates at the Children's Hospital of Philadelphia, where Heidi had her surgeries, are higher, somehow, until her third surgery, I could never picture her actually growing up. Now that she is going on 5 herself, we are much more positive. Still, with only a few of these patients in their late teens and early twenties, it's good to hear the stories of their lives. I am particularly drawn to hearing about those who refuse to be defined by their illness. We work very hard to encourage our children to live full lives and not let their challenges hinder them. So it's always good to read a story like this one.