It was at a routine weight check at the pediatrician’s office several days after their daughter Ella Ruth was born that her parents received the news that she had cystic fibrosis. Praying there was a false positive on her newborn screen or a mix-up at the lab, the family spent the next few weeks in agony waiting for their first appointment at Children’s Hospital and Medical Center with the Cystic Fibrosis Care team.
“We were not sure what the first appointment would entail, but shortly after arriving, her diagnosis was confirmed through the performance of a sweat-test, and we were immediately immersed in the world of cystic fibrosis,” her parents said. Their first appointment was four hours long, and they met with a nurse, pediatrician, dietician, respiratory therapist, and social worker. “Overwhelmed with a lot of information and a lot of emotion, we headed home to confront Ella’s disease head on,” they said.
Ella is now doing well and is an expert at taking medicine. In addition to taking medicine for her pancreatic insufficiency five times a day, she is also subjected to an inhaler and chest physical therapy at least two times a day, and more if she shows the slightest indication of being sick. She has been on antibiotics to fight cold and cough intermittently since being born as there is no “waiting it out” when it comes to illness and cystic fibrosis.
“Despite the terrifying unknown of Ella’s disease, waking up to Ella’s beautiful smile every morning momentarily erases those fears from our minds and reminds us to be strong and unwavering in our fight against this disease,” her family says.
The support from the Cystic Fibrosis Care team at Children’s Hospital and Medical Center and the Cystic Fibrosis Foundation as well as family and friends has been incredibly humbling. “The prayer, encouragement and fundraising given to the Cystic Fibrosis Foundation on Ella’s behalf has made us realize that we are not in this fight alone and we never will be. There are so many passionate about finding a cure that affects so few and that passion coupled with the indescribable love a parent has for a child has given us a resolve to never stop fighting.”