Breathing for Brooks

Brooks is a very happy and tough 3 year old boy. He was diagnosed with cystic fibrosis when he was just 10 days old. Being first time parents, we definitely had a period of time where we grieved the life we envisioned for Brooks. But as we learned more and more about CF, the more we realized that Brooks will live a full, happy, normal life, with CF only being a small part of it. And his 3 years of life so far have been just that and more! Brooks fills our life with so much joy and we are beyond blessed to have such a happy, silly, amazing, beautiful, healthy little boy! That is greatly due to the generous people who choose to donate to the Cystic Fibrosis Foundation. These donations are what fund the research to develop life-saving medications and therapies for CF and to ultimately find a cure for this horrible disease.

CF is relentless - it never takes a break. So that means we can't take a break either. Brooks has come a long way since he was first diagnosed as a baby. He no longer requires pancreatic enzyme medication (Creon) every single time he wants to eat something. After a little over a year of taking a CF modulator twice a day, Brooks’s pancreatic insufficiency has reversed and his pancreas is now working as it should on its own! He is digesting food normally and is growing well. This is very unheard of in the CF world and it is truly a miracle. We have upgraded from “pats” to “shaky shakes” in terms of chest physiotherapy. Brooks wears a vest twice a day for 30 minutes that shakes his lungs. Doing this helps break up the sticky mucus that builds up in his lungs in order to prevent any type of bacteria from getting trapped there and causing further damage. He also does a breathing treatment once a day after vest where he inhales a medication that thins the mucus in his lungs.

The day we received Brooks’s diagnosis, his doctor told us that it was a great day in time to be born with cystic fibrosis. We were very confused - when is it ever a good time to be diagnosed with such a horrible disease??? He explained that there have been so many advancements in medicine within the CF community. Life changing drugs have been developed and are quickly becoming available for younger and younger age groups. Life changing drugs that people like Brooks will qualify for very soon. These drugs don’t treat the symptoms of CF; they actually treat the underlying cause!

The latest and greatest drug, Trikafta, treats 90% of the CF population. NINETY PERCENT!!! In April 2023, Trikafta was approved for kids ages 2-5. Brooks was able to take his first dose of Trikafta on May 28, 2023!!

90% is an AMAZING accomplishment, but it is not a cure. Sadly, there are still 10% of people living with cystic fibrosis who have no "miracle drug." Many people with CF still do not benefit from existing therapies either because their disease is too advanced or because their specific genetic mutations will not respond. They are moms, dads, sisters, brothers, daughters, sons, and friends who struggle every day in the face of this devasting disease. We walk in Great Strides for them! I cannot sit back and say, “well my kid has his drug, we are done.” 

WE ARE NOT DONE! We don't have a cure!!

This is where you come in. The CF Foundation relies 100% on donations. The drugs that are out there and the drugs that have yet to be developed are 100% dependent on your donations. We ask you to find it in your hearts to join us in the fight! Become a member of our team, Breathing for Brooks, and watch a miracle happen! The CF story is the greatest story in medicine and we will win! Please join us this year at the 2024 Great Strides event in Nashville to show Brooks, and the 30,000 others in this country who fight cystic fibrosis every day, that we are in their corner and together we will make CF stand for CURE FOUND!