IdunnoO

You're welcome. Vertex Pharmaceuticals is developing the drug and it's in phase III clinical trials. They already put out a similar drug that affects about 4% of the CF population. Your friends daughter will likely be 6 by the time the drug is approved by the FDA and that is the youngest a CF patient can be to be prescribed the drug. CF children born recently are going to be able to live a much more normal life than those born 10, 20, 30 years ago.

I have CF and saw OP didn't reply but I just wanted to say that there is most likely going to be what is dubbed as an "almost" cure for most CFers in 2-3 years. It's going to treat the underlying problem gene which will cut down on lung infections, blockages, and the other life threatening things we face. I think that is encouraging news to tell a parent who has a newly diagnosed child. It is expected that this is going to drastically increase the average life span of a CF patient.

I suffer from CF myself and I've always said I would have rather been given cancer or HIV than CF. Now that you've experienced cancer what would you have rather been given if you could choose between the two?

Wow that is interesting. I guess my perspective was that cancer is either treatable or it isn't where yeah you go through hell for a period of time but you either come out a survivor or you don't. With CF I feel like a ticking bomb battling constant infection after infection and it will ultimately end me. Thanks for sharing your experience, you're a true fighter man and I hope you defy the odds as much as possible.