Brax is our 3-year-old son, born with cystic fibrosis (CF). He’s joyful, curious, funny, bright, energetic and full of life — and you’d never know just looking at him that he’s battling a rare and progressive, life-limiting genetic disorder that affects the lungs, pancreas, and other organs. CF causes sticky, thick mucus to build up in the body, which often leads to difficulties breathing, constant lung infections, and digestive problems.
When we received the call about his diagnosis when I was around 20 weeks pregnant, we were heartbroken. We had to accept a new reality and a wholly different future for our little boy. We didn’t wonder what sport he would play; we wondered if he could run on a field. We didn’t wonder about whether he’d make the honor roll one day; we just hoped he wouldn’t miss too many days of school due to hospitalizations.
Now, flash forward to May of this year, what we’d been waiting for since he was born. He started Trikafta, a pill taken two times a day to help correct the malfunctioning protein made by the CFTR gene. It’s been truly life-changing so far, not only for his health but also our anxiety about those things that could make him sick or expose him to germs. Twice a day, we mix his Trikafta granules (with different doses for morning and evening) into a small cup of yogurt. We call it Brax’s magic medicine!
We did so many things this summer that would’ve made us nervous before — Brax took his first airplane ride cross-country to Seattle for my brother’s wedding in July. He went to the Space Needle and Pike Place Market (which was swarming with tourists). And he’s started school! Like anyone else, he’s getting a new virus or cold every week but we aren’t stricken with the all-consuming anxiety we would have been before. For the most part, he’s clearing them quickly and back to running around in a few days.
Brax is learning, growing and his whole world has opened up. Since Trikafta, he has an increased appetite, and we’ve heard him say “I’m hungry” for the first time ever. He’s really living life and loving it. There’s always a fear he won’t tolerate it — which is why a cure is so important — but his first 3-month labs came back on Trikafta and looked great.
Despite the advancements, behind the scenes, we still put in a LOT of work to keep Brax healthy and stay on top of his CF. Brax takes 20 pills a day to properly digest his meals and snacks, spends at least an hour every day attached to his vest machine and nebulizers (and that’s on a “healthy” baseline day – more like three hours a day when he’s sick!), and takes daily vitamins to help his body absorb the nutrients he needs to grow. There is also constant cleaning and sterilization, weighing pros and cons of germ exposure in public settings or at birthday parties/events, and grappling with anxiety around him getting sick or hospitalized. Brax has had two hospital stays in three years and handled both with bravery and grace. He’s the biggest fighter we know and we’re forever in awe of his resilience.
We don’t take his health for granted. It’s truly incredible that this game-changing medication, which is made possible by the Cystic Fibrosis Foundation and everyone who supports its mission, is helping us stop Brax’s disease from progressing, keeping his lungs and body healthy and adding more years onto his life. We are super thankful and so happy it’s working for him. But we’re not done. We need to keep going until there are more treatment options for everyone with CF, and until we find a cure for this terrible disease. The CF Foundation is relentless in pursuing a cure, which is why we have no doubt that we’ll find one in Brax’s lifetime.
Time is something we want more of for Brax and all other CF warriors. The current average lifespan for someone with CF is 53 years old. That’s actually huge progress, considering most kids diagnosed with CF used to not make it past elementary school — but it’s not enough. And while we feel strongly that CF doesn’t define Brax, it’s our mission to raise awareness and funds in order to give him more birthdays and a life unlimited.
Today, CF has become one of the best stories in medicine because of the amazing work the Cystic Fibrosis Foundation is doing to advance CF treatments and medications. The nonprofit supports a wide range of research initiatives to tackle CF from all angles. There has been tremendous progress in fighting this devastating disease in the last decade, but there’s still more to be done. Cystic fibrosis can be relentless but so are we.
When someone donates to our team or gives to the CF Foundation in Brax’s honor, we feel such deep gratitude and support to know others are cheering him on and making a real impact on his future. One silver lining of this whole experience has been realizing what’s truly important — each other — and learning to live each day to the fullest (if only we could all have the energy levels of a toddler!).
Only 30 babies are diagnosed with CF each year in Georgia, and 40,000 in the U.S. currently live with CF. Because it’s such a rare disease, it’s crucial to build a widespread community that can stand strongly in our corner to help us make a difference and keep the momentum going. With your support, we can keep raising funds to help make CF stand for Cure Found.
To donate to Team Brave Brax please click here. All funds raised go directly to the CF Foundation.