Danielle Davis’s eyes sparkle as she talks about her son, Cameron. “He’s such a superstar with everything,” she says.
And she’s right.
In many ways, Cameron’s life looks like any toddler’s. He runs, swims and plays outside. And every Friday, he waves at his buddies on the garbage truck, who honk back and know him by name.
Cameron is like any 2-year-old. He just happens to have cystic fibrosis (CF).
Cystic fibrosis is a chronic lung disease that leads to thick mucus, which can clog the lungs, as well as GI symptoms. Cameron was diagnosed at a newborn screening – on Rare Disease Day, no less – and has been coming to Atrium Health Levine Children’s Hospital his whole life. In addition to being a Best Children’s Hospital for pediatric pulmonology, Levine Children’s Hospital has a Cystic Fibrosis Foundation-accredited care center – a designation given to select facilities across the United States for providing the highest level of care.
“Cystic fibrosis accreditation is an outward visible sign of an internal institution commitment to the best care. It assures the patients and families that they’re getting the highest level of care aligned with the national standards for CF,” says Ashley Chadha, MD, a pediatric pulmonologist at Atrium Health Levine Children’s.
Though Cameron gets top-notch medical care – from a team of physicians, nurses, respiratory therapists, dietitians and more – CF is a chronic disease. Like any lifelong illness, it doesn’t take holidays off and large chunks of every day are spent enduring therapies to help him breathe.
Even so, the Davises have found creative ways to make sure Cameron feels like any other kid. This means giving medications with ice cream, cuddling up for a 20-minute TV show during chest therapy and teaching Cameron that CF isn’t his whole life, just part of it. “His treatments are part of his daily life. He knows we get up, and we do the tasks we have to do, and then we can go play,” says Danielle. “He really is a superstar.”
Future full of hope
Though CF can feel like a big part of Cameron’s life, it’ll hopefully become smaller as he gets older. Not only will Cameron’s airways grow, requiring fewer treatments, but a breakthrough medication is being studied that has the potential to improve the quality of life for most cystic fibrosis patients. And because Cameron goes to an accredited cystic fibrosis care center, he gets access to these types of new, first-of-their-kind treatments as soon as they become available.
“My hope for Cameron is that he lives a full and healthy life. One that allows him and his family to look back on his time at Levine Children’s Hospital as a small but important part of his journey to a healthy future,” says Dr. Chadha.
In the meantime, Cameron is showing what it means to be a 2-year-old. A 2-year-old who can run, swim and play. A 2-year-old whose health challenges are part of his childhood, but don’t define it.
A 2-year-old who just happens to have cystic fibrosis.
