Katie Von Hagel is a 16-year-old high schooler living with cystic fibrosis (CF), a genetic disorder that causes a thick mucus buildup in the lungs and other organs. The diagnosis hasn’t stopped her from cheering for her beloved Gardendale High School Rockets or making the A-B roll. Nor has it stopped her from passing her driver’s license test or dreaming of admission to Auburn University to study nursing or physical therapy.
Katie was only 2 years old at the time of her diagnosis. When she was born in 2001, CF screenings were not performed on newborn babies as they are today. Although Katie spent eight days in the neonatal intensive care unit with a condition often referred to as wet lungs, her CF went undetected.
Katie’s mom, Jeanne, knew something was not right with her baby girl. Katie cried constantly and experienced abnormal bowel movements. After several visits to her primary doctor, Katie was referred to a gastrointestinal specialist. “They finally did a number of screenings on Katie that included one for cystic fibrosis, and that one came back positive,” Jeanne said.
“I felt like I was in a nightmare. I remembered that I cried all the time… I had hard time dealing with it,” Jeanne continued. “That is the last thing you ever expect – that you are going to have a child with a chronic illness. Our Catholic faith has gotten us through some of the worst moments of our lives. We have dealt with it in that way and every way since.”
Jeanne and husband David decided to continue Katie’s care at the Children’s of Alabama and University of Alabama at Birmingham (UAB) Cystic Fibrosis Center. The center, accredited by the Cystic Fibrosis Foundation, provides the highest quality care to about 290 children with CF from Alabama and surrounding areas. It also promotes better outcomes through quality improvement projects, researching new therapies, participating in national committees for improvement of care and mentoring new providers.
“We’ve always had good experiences with Children’s,” Jeanne said. “I have tremendous faith in the pulmonary team. Her doctors are very good. If she has something going on, they have gotten to the bottom of it.”
When Katie was diagnosed, Jeanne was pregnant with her second child, Kara. Although a diagnostic test can detect if a child in the womb has CF, Jeanne and David chose to wait until the baby was born to have genetic testing done. Kara does not have CF, however, Kara did inherit one non-functional copy of the CF gene, making her a CF carrier.
As Katie matures, doctors are preparing her for the Cystic Fibrosis Transition Program at Children’s. The program helps children successfully navigate healthy, independent lives as adults. “She is very responsible with her daily treatments and medications. I know if I’m gone and tell her what to do, she will do it,” Jeanne said.
Katie has handled every aspect of her disease well. To help her understand her individuality, Jeanne encouraged Katie to volunteer with United Ability, formerly United Cerebral Palsy of Greater Birmingham. “The hardest time [for children with CF] is when they realize they are different from their friends. I have always talked to Katie about how we are all made unique. Katie has learned how to deal with her disease in a very unique way,” Jeanne said. “She loves children and [volunteering] helped her become more empathetic toward others who have issues like herself. Being in that kind of environment and being able to help them out, I really think that helped turn her around.”
Today, Katie and her family help raise funds for the Cystic Fibrosis Foundation through an annual fishing tournament, Casting for a Cure, held the last weekend of October at Lake Guntersville State Park. The family previously raised funds through a golf tournament called Swinging for Katie’s Kids.
“Katie has a fabulous outlook on life,” Jeanne said. “She has had some difficulty, but she does not let grass grow under her feet. She is very busy. Nothing really holds her back. I think her faith also really helps her out in knowing we all have purpose and that there are reasons. Katie basically believes that we must use whatever life has dealt us and help others. We must live the best we can.”