Why Crozet is a long-running feature examining the many reasons that people come to the Crozet area, and why people stay here. Steve and Julie Kurtz came to find cleaner air for their daughter Maddie, who was diagnosed years ago with a serious lung disease. Maddie, an elite athlete, struggles with pulmonary hypertension. She’s been eligible for a Make-A-Wish Foundation grant for years, but made an unusual choice that the foundation calls “incredibly noble and altruistic.” Maddie’s home is in White Hall, and she goes to school in Pittsburgh.
She didn’t ask to go to Disneyland or Hawaii or even to meet a minor celebrity. It took her years and years of consideration, but Maddie Kurtz finally decided what to do with the $5,000 offered her by the Make-A-Wish Foundation. The 19-year-old graduate of Miller School is sending the money to a Kenyan school for children who have been orphaned, or who struggle with extreme poverty.
Her parents, Steve and Julie Kurtz, surprised their daughter with a dinner last month at the Ivy Inn to celebrate her generosity and to present the check to their former neighbor and long-time friend, Bonnie Lefbom. Lefbom’s non-profit, “For The Kids International,” supports the Kisima Academy and other small agencies helping the world’s most deserving children. Representatives from Make-A-Wish were also there with an enormous check made out to the school, which has grown from a family caring for 83 orphans in a few mud huts to a complex of 11 brick classrooms serving 300 students.
Maddie Kurtz is an exceptional athlete who swam, ran, and played tennis and soccer in her school years in Northern Virginia, so it was especially alarming when her parents began to see her struggling for breath. Slowly, it became clear that she couldn’t keep up with teammates in the water or on the field, and she was diagnosed with asthma. She switched to volleyball, a sport that has a few minutes of rest in between the running and jumping, and she also excelled at that. But the problem wasn’t solved: she got sicker and sicker, until finally her lips would turn blue if she walked even a short distance, or climbed a flight of stairs.
“It was difficult,” Maddie said. “I considered myself an athlete, so when I started to have problems, I couldn’t understand it.” She remembers being about 9 years old when she began noticing a slow decline. “I wasn’t super scared because I just didn’t know how much was involved.”
Doctors misdiagnosed Maddie with asthma for more than a year. Her oxygen levels were dropping into the 60s and 70s when she finally had an echocardiogram and then a right heart catheterization to reach the correct diagnosis of pulmonary arterial hypertension.
The long wait for diagnosis is not unusual, said Karen Smaalders. She’s the vice president for communications and marketing for the Pulmonary Hypertension Association, an international nonprofit based in Silver Spring, Maryland. “Often, people wait as long as two or three years to reach a correct diagnosis.” To shorten the time between the beginning of an illness to diagnosis, the association works to make the public as well as the medical community more aware of the symptoms: shortness of breath after very little movement, dizziness, and chest pain.
Smaalders said the disease strikes all ages and has a number of forms and causes. Infants can be born with it, or it may develop in later years. Some cases have causes––sleep apnea, a heart defect, use of methamphetamines or other stimulants––and other cases, like Maddie’s, are idiopathic, meaning there is no known cause.
As her family waited for her disease to stabilize, Maddie spent her middle school years being home schooled. Later, the family moved to Crozet in search of cleaner air than the air they were breathing in Northern Virginia, and they sent Maddie to Miller School. She was well enough by then to play volleyball and also spent a couple of seasons as a soccer goalie and a couple of years on the boy’s varsity tennis team. She had to skip many practices because of her health, but still was awarded first team all-conference honors her senior year.
During her home-schooling years, Maddie sewed many dolls to send to the Kisima Academy. Although she knew she was eligible for the Make A Wish grant, she was reluctant: “I thought there were probably a lot of children who could benefit from it more than I could,” she said. Finally, she decided to use it for the good of the Academy’s children.
Although the Make A Wish Foundation has an option for donations like Maddie’s, it’s far more likely their young beneficiaries will choose another category, said T.J. Zepp, the senior manager for marketing and communications at the Make-A-Wish Foundation of Greater Virginia. He explained there are five main classifications for wishes. The charity can help fulfill individual wishes to train for a profession, to travel to a destination, to receive a gift or gifts of their choosing, or to meet someone who inspires them. Far fewer choose to make a donation, as Maddie did. “What Maddie did is incredibly noble and altruistic,” he said.
Zepp said there’s an application process that often begins with a medical referral, although many families apply directly. A volunteer is assigned to work with the family to make sure their wishes are understood and carried out. Many small donations as well as corporate partnerships provide funds for the hundreds of wishes the foundation grants each week, with the purpose of giving hope to children and their families as they continue in their path towards healing.
Maddie said her disease is quite manageable now, although she had to learn a lot about managing it on her own when she started college at Point Park University in Pittsburgh. She’s studying film production and hopes to find work in that field after graduating. Her other goal: “I just want to stay active, and to lead a normal life as best as I can.”