Dear Friends and Family:
This year will be our 23rd year participating in the Great Strides Cystic Fibrosis Walk. Katie has been in and out of the new adult clinic this year with some CF related illnesses. But nothing like covid19 that is going around, thank God, so we are counting our blessings.
Katie was diagnosed at 4 months old. She has had her ups and downs and has grown up wearing a mask to every doctors visit – much like we are having to do right now. Yes, it makes it hard to breath. That is what Katie feels like on most days. Like breathing through a straw.
CF causes Katie's body to make thick, sticky mucus, which makes it hard to breathe and it clogs her digestive system. Katie lives with many 'extras'.
But with the generous donations you have all made in the past, the CF Foundation has made remarkable strides with new medicines to help. Katie has been lucky enough to be a benefactor of two of these medicines. Kalydeco, which helped only 4% of the CF population. And now, Trikafta, which helps about 80% of the population.
Trikafta is a new triple combined medication Katie has been on. It has improved her lung function. But she has some weird things too and can’t be on this medication 24/7 because of some of her other problems.
We know this is not the ultimate cure. But we pray this medicine will hopefully buy her healthier lungs until we find a cure.
Currently, there is no cure for CF, but with your help, one could be possible in the near future. The drug pipeline for CF is full of hope, but the CF Foundation has to sponsor many of their own drug trials due to the number of people with CF. Many large drug makers opt to work on drugs that have a larger population. Nearly 1,000 children are diagnosed with CF each year.
We need your help and no donation is too small.
Our first 23 years with Katie have taught us many new things but also shows us what a great future Katie has ahead of her. I only hope that you will help in making her future the best that it can be!
Thank you so much!
Becky, Suzanne, Katie, Grandma Nancy and Pappy