Cystic fibrosis won’t keep Katie Von Hagel down.
By Rosalind Fournier
Jeanne Von Hagel suspected early on that her infant daughter, Katie, was struggling. Many of Jeanne’s friends had babies around the same time, and she couldn’t help but notice the differences. “I did the one thing the doctors tell you not to—‘Don’t compare your baby,’” Jeanne remembers. “But Katie was actually older than the baby of a friend of mine, and while he was thriving, Katie was not. There were also a lot of symptoms and signs, mostly digestive issues, even when she was an infant that I knew weren’t right.
“It was terrifying.”
Eventually, Jeanne’s concerns bore out when Katie was diagnosed with cystic fibrosis, or CF. CF is a genetic disease—Katie’s mother and father are both carriers of the gene, though neither knew it—that causes persistent lung infections and breathing difficulty due to thick mucus that builds up in the lungs, pancreas and other organs. In Katie’s case, digestive problems were an early indication; her body wasn’t breaking down food properly to absorb the nutrients it needed.
According to the Cystic Fibrosis Foundation Patient Registry, approximately 1,000 new cases of CF are diagnosed annually. Over the years, patients’ survival rates and quality of life have improved dramatically thanks to new and better treatments—and today, Katie is thriving. Yet maintaining the treatment regimen is demanding, especially for an active teenager. Katie uses a nebulizer, a machine that helps deliver medicine into her lungs, twice a day. She uses a special vest once a day that helps shake her chest to break up the mucus. She also takes 30 pills every day, including five every time she eats to help her body digest food as it’s supposed to.
“Katie has done fairly well compared to a lot of cystic fibrosis patients,” Jeanne says, “but compared to children who don’t have to go through this…there’s never really a break from cystic fibrosis.” Jeanne and her husband, David, are also acutely aware of the everyday dangers CF patients face, including second-hand smoke and different types of bacteria that pose a much greater risk for Katie than for people without CF.
But Jeanne says the family’s Catholic faith—and Katie’s own, upbeat attitude—have helped the family to rally over the years and focus on the positive. “In the beginning,” she says, “I thought (it was unfair). But do we not all have something? I remember the way my mom said to me: ‘Everybody’s got their cross to carry, no matter what it is.’ So who are we not to have it?”
Raising Money for Others
Diagnosed at two, Katie has never known life without CF—which in some ways has made it easier to accept. In fact, one of her first clues that there was anything different about her came by way of a fundraiser started in her honor.
A member of the Von Hagels’ church had approached Jeanne asking permission to organize a golf tournament to raise money for CF in Katie’s name—“Swinging for Katie’s Kids”—and Jeanne readily agreed. It became an annual event, and Katie’s friends always came out to enjoy a pool party during the tournament. But that’s when Katie had a moment of realization: “None of my friends had a golf tournament with their name on it,” Katie remembers. “That’s when I knew something was different.”
Still, while the tournament was inspired by Katie, the family kept the focus on fighting the disease itself and helping other families living with CF. All the money raised went to the Laps for CF Foundation, which in turn supports the CF Care Centers at Children’s of Alabama and the University of Alabama at Birmingham; the Cystic Fibrosis Foundation; and a group called CF Hope, which assists CF families with financial support, transportation, and other needs. Later, Katie’s uncle started a second fundraiser in Katie’s honor, called Cast for a Cure and held every year at Lake Guntersville. “It has grown tremendously,” Jeanne says. “All of that money goes to the Pediatric Pulmonary Center at Children’s of Alabama, and Children’s has actually partnered with us now, so hopefully it’s going to just keep growing.”
Jeanne says the family has always been grateful for the support of their community, which she believes is important for any family living with chronic disease. “I don’t think anyone looks at our daughter and says, ‘There’s Katie with cystic fibrosis,’” she says. “It’s never been that way. But when something comes up, like one of our events, they all show up. There’s a lot of hometown support. The community of Gardendale has been phenomenal in supporting Katie’s cause, and it’s really been fascinating to watch how this has brought out the good in a lot of other people, too. They may not be able to do anything for her physically, but they have supported her emotionally, and to me that’s huge in helping somebody who has a chronic illness.”
Living “110 Percent”
As with many people who live with chronic disease, those with CF experience both good days and and low points. Jeanne remembers when Katie ran one of her best runs in a cross-country meet in eighth grade but got sick just a few days later from exposure to a rare bacteria. She ended up in the hospital for two weeks—as much frustrated by being cooped up and missing her regular activities as her family was concerned about the health scare. “I was just ready to be back with my friends and go to school,” she remembers. “But I had so many visitors—all my friends would always come see me. I had people I had never even met who came to see me, like my parents’ friends and some of the firefighters (friends of Katie’s dad, who is also a firefighter). A bunch of people sent cards and gave me gifts and food. On Halloween, they came to our room dressed up. So even though I was stuck in there, there was some kind of good.
“No matter how hard it gets,” Katie adds, “there’s always a brighter side. There’s always something better coming, and you just always have to stay positive and never lose faith.” And most of the time, thanks in large part to her parents’ diligence and her own discipline when it comes to following her care routine, Katie lives a relatively normal life. She’s been a cheerleader in Gardendale since seventh grade, she has an active social life, and like most of her peers, she’s now trying to decide where to go to college, whether she moves away for school or stays closer to home where her parents can continue to serve as backup with her daily routine.
That routine remains time consuming, with little room for error, yet Katie’s family takes it in stride.
“I’ve had people look at Katie and say, ‘Oh, she has cystic fibrosis, but you’d never know,’” Jeanne says. “Emotionally, she seems great. Physically, she’s very active. Her little motor has always gone 110 percent.”
Stephanie Gamble, a respiratory therapist at Children’s of Alabama who specializes in cystic fibrosis, has known the Von Hagels for a long time. “When you first meet Katie and her family, I definitely think their faith stands out a lot,” Gamble says. “They have so much hope and such a positive outlook. When they look at Katie, they don’t see CF as if it defines her. She may have this disease, but the disease does not have her. They just do what they need to do and go on with their lives—and I think her parents encourage her to live a normal life, which is exactly what the healthcare team at Children’s promotes as well.”
Recently Katie volunteered at United Ability, working with children who have cerebral palsy, and Jeanne can imagine her one day going into a career where she’s able to help children who struggle with their own issues. “Whatever she wants to do, we have high hopes,” Jeanne says. “She just started a new medicine that’s for her gene type, so we have hopes for that, with the idea that they’re going to keep improving the medicine. There’s a lot of research going on to help improve lung function. And I don’t think they’re going to stop until there’s a cure.
“I know the disease won’t ever go away for Katie,” Jeanne continues, “but it’s treatable. I just try to tell her, ‘Don’t compare yourself to anybody. We’re all individuals.’ And I’m very proud of how she handles her life.” •
