Kayli Drury

My Great Strides Story

I was born with a genetic lung disease that I like to call “65 Roses” since it’s easier to say and sounds similar :) this is an incurable disease that I am hopeful to see a cure for in my lifetime. I was born with two rare mutations (3905insT (thanks Mom) and R347p (thanks Dad)) and so finding a cure is even more difficult for me since I don’t fall into the population of about 80% of those with CF who have the common Deltaf508 mutation. My brother and I are 2 of 4 in the database of all with CF that have our mutation combination so therefore there is not a lot of history that helps us know what to expect. So far things have been going well and I’ve had to be hospitalized when I was 6 months old for what they call a “clean out” to help get me overcome being sick and then again for Pancreatitis. Good news is that I am healthy and happy now thanks to preventative care and the advancement in recent medicines all thanks to the CF Foundation. 

Cystic fibrosis affects the lungs, pancreas, and other organs. The symptoms can vary from person to person, and as people with CF live longer than ever before, their disease can become more complicated, leading to serious health issues.  

The Cystic Fibrosis Foundation has made extraordinary progress — including fostering the development of more than a dozen CF treatments — but these treatments are not a cure and not everyone can benefit from them. We must keep going until CF stands for Cure Found! 

Your support makes a difference for me!

By donating to my fundraising goal, you will help advance our mission to find a cure for me. Please consider joining us .