KNOWN IN REAL LIFE AS:
HARNESSING ELECTRICITY & MAKING LIVES BRIGHTER
Meet Volt (Brayden McDonald) at the Akron Marathon on September 28.
.8 & 10
View a course map.
Brayden McDonald, Age 10, from Akron, OH
Why Brayden is an #ACHero: Born with cystic fibrosis (CF), Brayden has grown up knowing it takes extra effort to keep Brayden’s lungs clear and to digest food. Brayden advocates for and relies on the care team to manage Brayden’s life-long condition through daily medications, nutrition supplements and lung-clearance therapy.
Sidekicks: Mom, Dad, and trusty dog, Clash
When she’s not busy overcoming obstacles: Brayden is very creative, funny and a good friend to others. Brayden enjoys playing Xbox games with 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 and is also an astute chess player.
Brayden’s Story: Brayden McDonald has covered a lot of ground in life – from the Rocky Mountains of Colorado to the hilltops of Akron – but the daily peaks and valleys brought on by cystic fibrosis (CF) have been the most challenging part of Brayden’s 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 Brayden’s 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. Since CF made it difficult for Brayden’s intestines to completely absorb fats and proteins, nutrients passed out of the body was unused rather than helping with growth. At times, Brayden felt no hunger.
“Brayden has always been underweight, but it’s not for lack of trying,” said Brian. “Because Brayden wasn’t gaining weight, the fear was that Brayden 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, the 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 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 Brayden to the Xbox. It was love at first game – Minecraft.
“Brayden’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 diet and lung function with help from Brayden’s parents and quarterly visits with 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 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, Brayden 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 lungs.
“I’m very proud that Brayden is able to advocate,” said Brian. “Brayden can do vest therapy and knows when to take medicine and really takes on a big role in Brayden’s care.”
By managing CF daily, Brayden can stay busy doing the things Brayden enjoys most – drawing fantasy worlds and characters and, of course, playing Xbox with friends.