So, I was looking up some statistics today to write my CF awareness month post since Great Strides is in 17 days!! I am so proud of myself and have been working very hard on being the best “ME” that I can find deep down. I was going to tell you that I am so thankful for the donations that helped us get to Trikafta! Then, I was going to remind everyone that this is not a cure - and to some patients, it’s not even an option. We cannot quit fighting UNTIL IT’S DONE for ALL of us. Then, I opened up my chart to brag about my hospital days so far this year at the time of the walk…….
Thirty two. 32 days is longer than a month. After the last few years I am so proud of that, but if I think about it too hard…. 32 is pretty devastating. That’s 1/4 of this year laying in this bed. 32 days is a long time.
My point is - as exciting as it was for Trikafta to come down the pipeline in time for ME personally, I still fight every. single. day. to keep myself alive and healthy.
Love y’all. I hope to see some of you at Vitruvian Park on May 20!!!
Let’s make CF stand for Cure Found!