Bennett and Breck's story

Bennett was diagnosed with cystic fibrosis as a newborn, ande recalls first becoming conscious of his illness as a kindergartener. He was around 6 years old when he noticed other kids were running and playing outside while he found himself indoors receiving multiple treatments a day for CF, a progressive genetic disease that affects the lungs, pancreas and other organs.

It was difficult “knowing that other kids [could] run and play while I’m staying at home,” Bennett says.

But he hasn’t been able to receive all the care he needs at home, so Bennett has also visited the Claude Prestidge Cystic Fibrosis Center on the Dallas campus at least four times a year for disease management by a care team that includes physicians, dietitians, genetic counselors and psychologists.

Now 13, Bennett is starting to share his years-long perspective on Children’s Health through the Youth and Young Adult Board, which is a new part of the Children’s Health Family Advisor Network (FAN).

“My ideas matter!” Bennett says. “I’ve been to the hospital and know what being in a hospital is like. If I have a chance to make it better, why not?”

Bennett isn’t the first in his family to advocate on behalf of patients. His mother, Breck, has worked with organizations such as the Cystic Fibrosis Foundation for several years.

Breck says advocating gives her a chance to have control, and she wants her son to have the same opportunity. Now that he’s a teenager, Bennett has taken responsibility for managing his care routine – for “owning his disease,” you might say – and he’s also stoked about providing the patient’s perspective to Children’s Health decision-makers.

Breck describes her son as honest, deep thinking and outgoing, and she also says he’s able to profoundly “articulate the blessings and struggles that come with CF.” Bennett should be a great fit for YAB.

Learn more about FAN
Youth and Young Adult Board application (for 13-to-17-year-olds)