Mama K,
It does seem like that second mutation is super rare, I also couldn't find it in any databases so I hope that UK CF trust is able to answer you. But I wanted to address the second part of your question - yes, absolutely, there is a future for your children. There has never been a better time to be alive for people with CF. Infants born today are, on average, expected to live at least into their 50s. There are therapies currently in clinical trials that could be approved as early as next year for people with dF508 that will increase that live expectancy possibly into the 70s. Also, what mutation your children have doesn't really predict how their CF will go - there are a few things we can say like some mutation classes tend to be pancreatic sufficient, but by and large CF is a highly individual disease and mutation class is just one very small part of the picture. I have two copies of the dF508 mutation, which is considered to be a "severe" mutation, but I have nearly normal lung function and am 24 and pursuing a PhD. That's not to say that CF hasn't presented its challenges, but it is much more "livable" now than it was even 20 years ago when I was born.
I am happy to answer any more questions you may have - I'm sure you are overwhelmed at the moment. Hang in there.
