My parents were young when I was born and hadn't dealt with anything that would have prepared them to deal with my health up until that point. Everything they know, they learned by trial and error.
They also didn't have a great deal of money and already had my brother to take care of. It is mostly because of them, and because of the great lack of attention that I have witnessed towards congenital heart defects that I would like to start the Thumbellina Foundation. It is my idea of a non-profit agency that helps congenital cardiac defect patients and their parents at all ages and stages of their conditions.
It is named not for the Thumbellina story, but for a doll I have always had that I used to take to the hospital when I went. The only problem is, I have no idea how to start a non-profit and what to do once it is started. So for now it is just my idea...I have great hopes for it one day.