First of all, sorry to hear about your child's health condition. My child has asthma, and that is tough enough! Second, I want to say that I have met people with CF in their 30's so there are some people out there who are beating this disease.
There is a support group online, it is as inspire.com, this is a group of people with all kinds of diseases. the CF group is at this link. you will have to register to join and post, but you can look around and see if this is for you. you should be able to talk to all kinds of parents of kids with CF from all over the country. I know about the group because I have sarcoidosis and I am on inspire as dwmom2008. here's the link:
God bless, and good luck!
at 9:04 PM on May. 18, 2011