I know you're scared because I remember how I felt when my daughter was diagnosed. She was in the hospital for pneumonia and we were told to take her home and enjoy her because she wouldn't live long. WOW! Today, she's a beautiful, blond, tanned 16 year old cheerleader!!! She has played the piano, soccer, been in theater productions at school, has a boyfriend, went to the prom, and been on a competition cheer team, as well as the varsity team at her school. She has only been in the hospital 4 times in her entire life. Her lung function is usually 100%.
Your son does have a serious illness, but he can many years of a normal, healthy life! Just listen to your doctor (assuming he/she is a good one) and take very good care of him! Best of luck!!!
My email is revamelton@hotmail.com if you feel like you need someone to talk to!