It’s not unusual for little girls to be crazy about horses. In Taylor Durham’s case, riding and caring for her pony, Saddleback, may be just what the doctor ordered. Taylor has cystic fibrosis and has been a patient at University of Iowa Stead Family Children’s Hospital since she was 5 weeks old.
Cystic fibrosis is a genetic disease that causes thick, sticky mucus to build up in the lungs, digestive tract, and other areas of the body. It is one of the most common chronic lung diseases in children and young adults. It is incurable, but medication, nutritional supplements, and treatments to loosen and remove mucus can fight the effects of the disease.
The Durhams came to UI Stead Family Children’s Hospital with a diagnosis but no information about how to treat her disease. “It was all so new to us, just nerve-wracking,” says Taylor’s mother Jackie Durham. At her first appointment, pediatric pulmonologist Jeffrey Smith, MD, spent over two hours educating the assembled members of the extended Durham family about her illness. “After that, we knew how serious our daughter’s illness was and that there would be challenges. At the same time, we felt well-informed and comfortable with the team that was going to care for her.”
The doctors explained things well, says Billy Durham. “I’m not much of a doctor person, but they’ve been good.” He adds, “It’s no nonsense. If you ask them, they’ll tell you.”
Taylor was started on high-calorie formula, enzymes to help her digest her food, and vitamins. The staff also taught the family how to keep Taylor’s lungs clear and to use a special vest to loosen the mucus. That was the first of between four and six trips a year to UI Stead Family Children’s Hospital, a 340-mile round trip from their home.
Taylor and her brothers, Keithand Dylanraise and show animals at the local county fair. Taylor, who plans to be a horse trainer when she grows up, can be found several times a week trotting her pony around their property. Riding Saddleback is her own self-prescribed chest therapy, because the bounce of the pony’s gait loosens the mucus in her lungs. Saddleback and his giggling girl have a special bond; the pony, which had never been trained to carry a rider, allowed Taylor to break and ride him.
This attitude sets the tone for her medical care. “Even though Taylor is now old enough to understand that her disease makes her different and is supposed to limit her, she has never allowed that to be the case,” says Jackie.
In 2010, doctors found that the steroids she takes to reduce inflammation in her lungs have caused her to develop diabetes. Taylor is matter-of-fact about what needs to be done. “I wipe my finger off and I poke it because my blood sugar has been low and high,” she says.
Jackie says that Taylor is “our miracle child. Instead of us taking care of her and teaching her about life, her outlook on life influences everyone around her.”
Taylor challenges her schoolmates to raise money for the Cystic Fibrosis Foundation through donation jars in the classrooms. When she was in first grade, she raised $1,100 to support research to find a cure for cystic fibrosis.