Palmer Horton isn’t in kindergarten yet, but you don’t need to simplify things for her. She’s 5-going-on-11 and knows so much medical jargon, she keeps even her doctors on their toes.
Unfortunately, just as Palmer challenges her care team with her spunky attitude, she has a rare, lifelong lung condition that presents challenges of its own. She was born with cystic fibrosis, which causes her body to produce a thick mucus that can clog her lungs, making it difficult to breathe.
In addition to taking 30 pills a day, Palmer undergoes two hours of breathing treatments, plus a vest that shakes the mucus loose. And that’s when she’s well.
Since she was born, Palmer has been hospitalized eight times for infections and complications. Keeping her from getting sick requires the support of a full care team – which Mallery, Palmer’s mom, calls their “village” at Levine Children’s Hospital.
Her medical team includes nurses, respiratory therapists and dietitians, as well as one of Palmer’s favorites: Ashley Chadha, MD, Palmer’s lung specialist, who Mallery says “cares so deeply for his patients and their families.”
But cystic fibrosis is more than a physical disease. Palmer has to fight for normalcy in every part of her life, and she’s not fighting alone. Palmer is backed by an expert medical team and a family who go the extra step to bring her the best care for a brighter future.
Brighter futures, one day at a time
When Palmer’s parents first heard their newborn’s diagnosis, they were overwhelmed. They didn’t know what a pulmonologist was, let alone what it meant to have cystic fibrosis.
Today, the Hortons are on the board of the Cystic Fibrosis Foundation and were the driving force behind making Levine Children’s Hospital an accredited care center. An ‘accredited care center’ is a fancy, but important way to say the highest level of cystic fibrosis care is all in one place.
Through their advocacy, the Hortons are making the future brighter not just for their daughter, but for all kids in our region with cystic fibrosis.
Cystic fibrosis is a degenerative disease, which means Palmer’s condition will likely get worse over time. The Hortons are taking each day as it comes and are fighting to give their little girl as normal a childhood as possible – with hopes of as normal a future as possible.
“She and her family have remained strong and committed to fighting this disease and holding a positive outlook on the future,” says Dr. Chadha.
Today, Palmer enjoys going to school and swimming with her little brother. One day, she might want to go to college. Or have a career. Or start a family of her own.
“I don’t want her to be beat down by this disease. I don’t want her to bow out of things because of her health,” says Mallery. “My hopes and dreams for my child are the same as your hopes and dreams for your child. Mine just aren’t as realistic right now.”
Whatever she decides to do – or not do – we’re all fighting for the same thing: for Palmer to have the freedom to choose how she wants to live her life, regardless of what her disease might say. “Palmer overcomes challenges presented by her disease through her own strength and resolve,” says Dr. Chadha.
We won’t sugarcoat it for you: Cystic fibrosis is tough. But then again, so is Palmer.
