Hero: Brayden McDonald
Diagnosis: Cystic fibrosis
Superhero name: Volt
Super power: Harnessing electricity and making lives brighter
Sidekicks: Mom, Dad, and her trusty dog, Clash
Why Brayden is an #ACHero: Born with cystic fibrosis (CF), Brayden has grown up knowing it takes extra effort to keep her lungs clear and to digest food. Brayden advocates for herself and relies on her care team to manage her life-long condition through daily medications, nutrition supplements and lung-clearance therapy.
When she’s not busy overcoming obstacles: Brayden is very creative, funny and a good friend to others. She enjoys playing Xbox games with her friends and has a knack for drawing and writing comic book characters.
Did you know fact: This year, Brayden is building a Soap Box Derby car as part of an afterschool club. She’s also an astute chess player.
Brayden McDonald has covered a lot of ground in her life - from the Rocky Mountains of Colorado to the hilltops of Akron - but the daily peaks and valleys brought on by her cystic fibrosis (CF) have been the most challenging part of her journey.
“CF is a genetic disease, but since my wife and I don’t know anyone in our families with the condition, we were surprised her newborn screening was positive for CF,” said Brayden’s dad, Brian. “We didn’t know what CF was, so we had a lot to learn.”
CF often causes buildup of thick, sticky mucus that can damage many of the body's organs, particularly the lungs and digestive system.
Almost immediately, Brayden’s parents noticed that eating and gaining weight was a challenge for her. Since CF made it difficult for her intestines to completely absorb fats and proteins, nutrients passed out of her body unused rather than helping her grow. At times, she felt no hunger.
“Brayden has always been underweight, but it’s not for lack of trying,” said Brian. “Because she wasn’t gaining weight, the fear was that she wouldn’t be able to fight off lung infections, so we spent a lot of time focusing on nutrition those first few years...we still do.”
For additional support, when Brayden was 4, her family moved from Colorado to Akron to be closer to family.
“Before relocating, we toured Akron Children’s to scout the facility and ask questions,” said Brian. “Everyone was so friendly and helpful and the Pulmonary Clinic was in a new, modern space. The tour eased our decision to move back to Ohio…we knew we’d be relying on Akron Children’s for Brayden’s health care needs.”
Brayden is also more susceptible to lung infections because her CF causes the lungs’ lining to become sticky, which traps bacteria. During a particularly bad lung infection, Brayden spent 2 weeks at Akron Children’s where a thoughtful nurse introduced her to the Xbox. It was love at first game - Minecraft.
“She’s been in love with gaming ever since,” said Brian. “One of the great things about Children’s is they remember kids, even when they’re not feeling well, still want to be kids.”
Now 10, Brayden works hard to ward off infection by monitoring her diet
and lung function with help from her parents and quarterly visits with her Akron Children’s CF team, including Dr. Gregory Omlor, respiratory therapy, physical therapy, psychology, genetics, dietetics and social work.
“It’s really a group effort,” said Brian. “They run her checkups efficiently and also discuss any new treatments and therapies that might be available.”
Brayden is used to therapy and taking medications, so when a clinical trial becomes available, she isn’t afraid to get involved.
“Akron has several clinical trials that Brayden has been able to participate in,” said Brian. “Right now, CF is a life-long condition, but that doesn’t mean it has to be that way. Through trials at Akron Children’s and elsewhere, we remain hopeful that new medicines or treatments can help improve the lives of those with CF...or even cure it.”
Today, Brayden takes over 20 pills a day to manage her health, uses a g-tube at night to get additional nutrients and does home therapy twice a day via a nebulizer treatment and mechanical vest therapy to clear her lungs.
“I’m very proud that Brayden is able to advocate for herself,” said Brian. “She can do her vest therapy on her own, knows when to take her medicine and really takes on a big role in her care.”
By managing her CF daily, Brayden can stay busy doing the things she enjoys most – drawing fantasy worlds and characters and, of course, playing Xbox with her friends.
I’m fundraising as part of the FirstEnergy Akron Marathon, Half Marathon and Team Relay. Funds raised through my online fundraising page will assist patients and their families at Akron Children’s Hospital.
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