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Life-saving treatment helps Brookhaven toddler living with cystic fibrosis

Brax Pope is two years old, and thanks to new treatment options, his parents see more hope for his future.

ATLANTA — Medical advancements in the treatment of cystic fibrosis have made a Brookhaven toddler's life much easier and given his parents more hope for their son's future. 

Brax Pope is two years old and lives with cystic fibrosis, a chronic and rare genetic disorder that attacks the lungs, making it hard to breathe and, over time, can be life-threatening. It affects nearly 30,000 people in the US. 

Through the pain, Brax is still non-stop. He runs from his dad’s arms to his playroom and back. His parents said he's truly changed how they view life. 

“He is 100-miles-per-hour.” His dad, Carter Pope, said while laughing. 

When Brax was a few months old, he spent 17 days at Children’s Health Care of Atlanta, but at two years old, he's happy and full of personality.

“Everyone who meets him says he’s a joy to be around.” His mom, Jessica Pope, said. “You’d have no idea he has CF.”

Brax wears a vest that shakes him daily, helping clear mucus from his lungs. He's a pro at swallowing pills, taking a handful a day. The Pope family is grateful for a fairly new medicine that's kept him relatively healthy since his initial hospital visit.

Credit: WXIA
Brax Pope is 2 years old and lives with cystic fibrosis, a chronic and rare genetic disorder that attacks the lungs, making it hard to breathe and, over time, can be life-threatening. He wears a vest that shakes him daily, helping clear mucus from his lungs. He's a pro at swelling pills, taking a handful a day.

“There is so much hope they are working towards a cure.” His mom said. “We know that is the difference in saving his life.”

This push for a cure and the new medicine is the result of work in Atlanta decades before Brax was born. Carter and Jessica quickly point out it’s possible because of a local family, the Choates.

They are a family of builders and started Choate Construction in Atlanta in 1989. That year they committed to raising money for CF research in honor of Leann Rittenbaum Ott. Leann was a close family friend of the Choates and was diagnosed with CF as a toddler.

“I see Leann in every CF patient, those like Leann who paved the way.” Emily Choate, Leann's childhood best friend, said.

Credit: Courtesy of family
Photos: Leann and Emily

RELATED: She lost her best friend to cystic fibrosis, but this new 'miracle drug' could save others

Yearly their company hosts a fundraiser and car show called 'Cars & 'Q for the Cause' with hopes that the additional funding would bring a cure. The charity event raised over $500,000 for CF in 2021. 

Shortly after Leann died in 2018 at 33 years old, researchers discovered a life-changing treatment. And in October 2019, the U.S. Food and Drug Administration approved the use of the triple-combination modulator - which includes Elexacaftor, Tezacaftor, Vacaftor - or the Trikafta.

This triple-combination drug was the game changer doctors and those with CF hoped for. It's the drug helping Brax live his best life in 2022.

Credit: WXIA
Brax Pope is 2 years old and lives with cystic fibrosis, a chronic and rare genetic disorder that attacks the lungs, making it hard to breathe and, over time, can be life-threatening.

“It took those like Leann to go first.” Choate said. “And while we lost Leanne right before Leann came on the market, her spirit lives on in these new CF patients.”

People with cystic fibrosis ages 12 and older, who have at least one copy of the F508del mutation, can use the drug - which is 90% of all cases. The advancements in treatment are significant, but 10% of CF patients still don't have the help they need. And the goal is still to help all and, ultimately, keep working for a cure. 

The 2022 Cars & ‘Q for the Cause fundraiser takes place on Saturday, October 22, from 3 p.m. to 6 p.m. at  8200 Roberts Drive in Atlanta. Parking is free, and shuttles from the overflow parking areas will be available. 

Buy tickets early! Advanced tickets are $20 for event entry and dinner, or pay $40 for admission, dinner, and access to the bar (legal age permitting). Tickets rise to $30 and $50 on October 14 and could sell out. Children under 8 years old are free. 

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