By Ruby Thomas, Record Staff Writer
Luke Klausing is a typical 11-year-old boy who loves playing sports and video games.
Luke also takes about 30 pills and undergoes two hours of breathing treatments every day to control the symptoms of cystic fibrosis — a rare genetic disease that affects the lungs and other organs.
These are two of the trials of his illness that Luke shared with legislators on Capitol Hill last month. He and his family were chosen by Norton Children’s Hospital to attend the 14th annual “Speak Now for Kids Advocacy Day” in Washington, D.C., June 26-27.
The Klausing family, members of St. Agnes Church, was chosen because the parents are very involved in Luke’s treatment and have taught him to be involved in his care as well, said Emmett Ramser, chief administrative officer of Norton Children’s Hospital.
During the two-day event, young patients and their families travel to the nation’s capital, from across the country to share stories of their health-care journey in the hopes that lawmakers will keep them in mind when making important decisions about health care and patient access, said Ramser during an interview July 5.
The Klausing family — Luke, his parents Jessica and Joey Klausing and 6-year-old sister Emma — met with U.S. Sen. Mitch McConnell and Rep. John Yarmuth and told them about Luke’s struggle with cystic fibrosis.
Luke, a sixth-grader at St. Agnes School, said he shared with Rep. Yarmuth and Sen. McConnell what life is like living with cystic fibrosis. He loves to play soccer and basketball, but on very hot days he struggles.
“It can be kind of hard sometimes,” said Luke.
Joey Klausing said he told the lawmakers about the challenges of having a child with cystic fibrosis. Luke has to travel with the medical equipment he uses for his breathing treatments everywhere he goes.
“Cystic fibrosis is always there. There’s no vacation from it. It’s always on your mind. That can be stressful for the family,” he said. “Luke is a fighter and a tough kid.”
Luke is one of about 600 people diagnosed with cystic fibrosis in Kentucky and one of about 30,000 in the U.S., according to Ruth Hans, senior development director of the Cystic Fibrosis Foundation of Kentucky. Cystic fibrosis is a rare genetic disease and “very complex,” said Hans.
Parents who are both carriers of the gene have a 25 percent chance of having a child who develops the disease, said Hans. There are about 1,800 different mutations of the gene that causes the disease, which makes it very complicated. No two cases are alike, she explained during an interview July 5.
According to the Cystic Fibrosis Foundation’s website, www.cff.org, the illness can worsen during hot days of summer. And a child like Luke loses more salt in his sweat, which can lead to nausea, vomiting, headache, muscle weakness and cramping during a soccer game, for instance.
Joey Klausing said having the opportunity to share details of Luke’s medical journey was of the “utmost importance.” He hopes that meeting an 11-year-old boy whose life expectancy is 38 years will “resonate” with lawmakers, he said.
Rep. Yarmuth and Sen. McConnell were receptive to hearing the family’s healthcare journey and plea to make children’s health a priority, said Joey Klausing.
Luke’s care and treatment have become a family affair for the Klausings.
Joey Klausing said he and his family live their life by the teaching found in the 12th chapter of the Gospel of Luke: “For unto whomsoever much is given, of him shall be much required.”
The Klausings are fortunate, he said, to have careers that allow them flexibility. Because of this, they’ve felt called to help others living with cystic fibrosis, he said.
The couple has partnered with Norton Healthcare to create the Respiratory Institute of Kentuckiana for research and pediatric treatment of cystic fibrosis, asthma and other respiratory illnesses, said Joey Klausing. The couple has helped raise $1 million for the institute, which they hope will be built by 2020.
Luke’s little sister Emma is also involved in her brother’s care. Emma creates paintings and gives them away in exchange for a donation to the institute. While in Washington, Rep. Yarmuth commissioned Emma to paint his cat.
Luke said the best things about his trip to the U.S. capital was dining out and visiting the monuments and museums. But he hopes the visit will yield results, too.
“Hopefully they will donate some money, so that we can get closer to finding a cure for cystic fibrosis,” he said.