I don't have any advice, but as a mum who was called and told her son had CF (was a false alarm, he is a carrier) I was devistated. For days I cried and was mourning the life he wouldn't have. Just offer to be there if they need anything, babysitting, meals, cleaning, a shoulder.

It is a tough journey, but with the improved medical findings they can live a fairly normal life. It means a lot of physio, daily medication and constant hospital stays with chest infections but the life expectancy is around 30 years atm (and when I was a kid 10 years ago it was only in your teens!!) so it's looking better all the time.

Who knows, by the time shes in her teens they might have a cure!