Brooks is our sweet 4 year old son who is living with cystic fibrosis. He was diagnosed at 10 days old. Due to his specific genetic mutations (G551D and F508del), Brooks was able to start on a modulator medication called Kalydeco at 5 months old. This modulator allowed him to gain weight and improved his lung function.

When Brooks was first diagnosed, our CF clinic checked his stool for pancreatic elastase to measure his pancreatic function. The results confirmed what they expected with CF, Brooks had pancreatic insufficiency. This meant that he had to start taking pancreatic enzymes with all of his meals in order for him to properly digest his food and absorb the nutrients so that he could gain weight. Every meal, every snack, every bite of food he ate, he also needed a certain number of pills with it.

Around 14 months old, Brooks's doctor rechecked his stool and to our surprise, his numbers had increased (which indicated that his pancreas was functioning sufficiently!) They rechecked it a couple more times and his numbers continued to increase. Our clinic then made the decision to wean Brooks off of enzymes, since his pancreas was functioning normally. The modulator (Kalydeco) he was on had essentially restored his pancreatic function and he could now digest food without the help of enzymes (right about the time he had finally learned how to swallow whole pills :)).

In April of 2023, the new triple modulator, Trikafta, was approved for children ages 2-5. Brooks turned 2 years old just 2 months before this, so we were thrilled he was finally able to begin this new medication. His previous modulator (Kalydeco) only targeted one of his mutations, but Trikafta would target both of them, resulting in even less symptoms, less lung damage, and overall better quality of life.

Brooks doesn't just live with CF; he THRIVES. Having cystic fibrosis is just one small thing about who he is. It does not define him. Brooks is our "smiley boy" who loves all things boy-related. He loves ghostbusters, dinosaurs, listening to his daddy's music, and playing the drum set in our basement. He also does his shaky vest twice a day and does his breathing treatments like a champ!

Brooks is HAPPY and HEALTHY because of the donations made to the Cystic Fibrosis Foundation. These donations have funded the research that have led to the development of these life saving medications.

However, the work is not done! While the CF Foundation has made incredible progress, not everyone with CF can benefit from existing therapies. This will require time, funding, and persistence. Your donations will buy the science and research that is necessary to make CF stand for CURE FOUND.

We invite you to take part in Great Strides by joining our team. We promise, you belong here! This event promises to be a fun-filled day where you can help advance the care and research needed to cure cystic fibrosis. By walking with us, you'll enjoy not only the natural camaraderie (yes, lots of laughter!), but the important impact we are making together.

Our team is committed to providing every person with CF the opportunity to live a long, healthy life. Will you join us?