Charlotte,
Saw the other post you made, but I decided not to get invovled in that mess *ahem*, but I will answer your question here, if you like.
I was diagnosed with CF at 6 months due to failure to thrive. As far as my specific mutation, I don't know it off the top of my head, but I would say I have a moderate case of CF. After that initial hospitalization, I managed to stay out of the hospital until I was 12, when I had my first pulmonary exacerbation ((sp?) a.k.a. severe lung infection), for which I needed IV therapy. Until then I'd been on oral antibiotics for infections. I didn't have any special treatment growing up, I just did my therapy as ordered. My parents never restricted me from anything, and I attended public school. The only restriction I had was during my physical education classes. My coaches knew about my CF and didn't overexert me. As a matter of fact, my mother made sure to give each of my teachers a flyer about CF to make sure they knew.
As I progressed into high school, I started to realize that I was getting worse. Even just a simple treck to class in the morning would make me short of breath. But I managed to hang in until graduation. I'd tried home schooling a few days a week, but ended going back to public school full time because I didn't think I was getting what I needed from a tutor. When I needed to be hospitalized (which by now had become every 3-4 months), I would get school work from my teachers for the next two weeks and do it when I had spare time. My teachers always gave me a break for that.
I met a wonderful boy, Richard, when I was fifteen, right after I'd had my MediPort placed (my veins had collapsed from having so many IV's so I really needed one, I had it put above my left breast. Don't freak out about it, it's a very small scar and a pretty easy operation, in case your daughter ever needs one. It really does help!) Lucky for me, Rick remembered me from way back in middle school, and already knew I had CF (he didn't quite know what that was at the time, but he knew it was serious). He found me immediately after I got back from the hospital to make sure I was okay. Turns out he'd had a crush on me since the 6th grade ^_^ So I informed him about my illness upfront, but it didn't matter to him. He wanted to date me anyway, and after 5 years, I'm happy to say that we're still going strong. In fact, I owe a lot to him because after we started dating, I managed to stay out of the hospital for 9 months, a record for me. I think that was due to him being in my life and giving me that mental boost. Mental heatlth is just as important as physical!
Anyway, after graduation, I decided not to go to college (didn't want to wear myself down anymore), but I did take two home college courses; medical transcription and web design. I'll be certified in both as soon as I finish. I tried working for a while, but I found that I got tired too quickly, and had to quit after just two weeks due to severe fatigue and another exacerbation. I applied for SSI, which was a godsend because they pick up the insurance tab if my primary doesn't pay. Therefore my medical bills are minimal. The downside to goverment help is the fact that 1) you can't get married unless your spouse makes an insanely low amount of money, and 2) you can't own a damn thing. Both of which really piss me off, but that's another topic...
Right now, I'm living at home with my parents, my sister (10 years older, no CF because of a different father), and my two cats. Rick and I are hoping to move in to our own place sometime soon, and while we can't get legally married (because I don't want to risk the insurance benefits) we will practically be wed. My FEVI at my last appointment was in the lower 60's, but my doctors say I'm actually quite healthy. I asked him last time on a scale of 1 to 10 (1 being the worst) where I was as far as severity of my case. He said between 7 and 8, which is pretty good! I'm limited as far as physical activity (i.e. I can walk the mall maybe twice without getting too worn out, I use a wheelchair at places like Disney World so I don't overexert myself, etc.). We do have both a pool and a hot tub, which I use regularly for exercise. Most of my hobbies, though, are low activity, i.e. drawing, writing, reading. So the physical limitations don't bother me as much.
I did notice that when I was in the pediatric unit, I was hospitalized for almost every infection. Now that I've transferred to the adult clinic, I do home IV's if I need them and am only admitted to the hospital when I'm VERY ill. This usually only happens once a year, right around February. I think it has a lot to do with the weather.
I think I just covered enough of my history to make your eyes bleed. Sorry for the length, but I hope this answers most of your questions. As you've read, yes, CF is a killer, but I look at it this way; quality over quantity. Your quality of life matters a lot more than the length of it, in my opinion. But treatments are progressing. While I personally don't believe a cure will be found for this disease or any other, I do believe that there will be advancements in longevity. Your daughter may go a very long time before she starts to decline. It depends on many things, including your treatment regimen. But the most important to me of anything is mental health. We all get depressed at times, that's normal. God knows I've bauled my eyes out plenty of times, and I didn't grasp the full weight of this disease until I was about 13, but I moved on to the point where death no longer scares me, and I'm content with my life. I have a loving family, a lover who would go to the ends of the earth for me, and a great home. That counts more than any amout of medication.
K, I'm going to shut up now. But if you have any more questions, feel free to ask. I'll answer to the best of my abilites. You and your daughter take care!