CF is such a weird disease.....it affects each individual differently, despite having the same mutations, etc. One of my very good friends w/ Cf was a twin. Same mutations, same parents, same home/upbringing.....Lori lived until she was 40, her sister died at 8. Why? When everything was, on the outside, "the same"?
Its hard for us to understand why one treatment works for one and not another. We all want our kids to improve. You get ur hopes up about a certain therapy, but after a while, have to face the disappointment that it doesn't work for your kid. Nothing against the therapy, just crappy CF!
Anyway, no matter what our decisions may have to be, we are here for support and suggestions.
Stay strong.
Responses