Batesville Herald Tribune, Batesville, Indiana

Local News

May 8, 2013

Walk jump-starts cystic fibrosis research

— A Great Strides  Walk for the Cure of Cystic Fibrosis is slated for Sunday, May 19, at Liberty Park in Batesville. Sponsored by the Cystic Fibrosis Foundation Greater Cincinnati Chapter, registration starts at noon and the 5K at 1 p.m.

After participants finish, “We’ll have a cookout and Magical Dan of Batesville will do a magic show,” reports Leslie Lucas, CFFGCC development director.

She expects close to 250 people on 24 teams at the Batesville fundraiser. “It’s definitely grown.” Corporate teams include Sunman Elementary School, Hill-Rom, Batesville Kroger and Weight Watchers.

In 2012, the Greater Cincinnati Chapter raised $610,000 to fund life-saving research, quality care and education programs, according to the Web site. “Real progress toward a cure has been made, but the lives of young people with CF are still cut far too short. We urgently need the public’s continued support to fulfill our mission and help extend the lives of those with the disease.”

This year the goal is $660,000. To help achieve that figure, “we’re hoping to raise $40,000” at the Liberty Park event, Lucas says.

For the fourth year, Joe and Jenny Bulach, New Alsace, and their children, James and Julia, will be walking in honor of their daughter, 8, who was diagnosed with the rare illness at 14 months.

Jenny Bulach believes the annual walks are important “because supporting the CF Foundation is really the future for these kids.”

She explains drug companies tend to ignore creating cystic fibrosis medications because with such a limited patient base, it’s not very profitable. “The CF Foundation jump-starts the research ... so companies will develop” new drugs.

In 2012, the U.S. Food and Drug Administration approved the groundbreaking drug Kalydeco™,  the first one to treat the underlying cause of CF, according to Lucas notes, “It corrects cystic fibrosis at the cellular level for 4 percent of our patient population. It’s not a cure for everyone ... but it’s created a pathway for us to follow and we know we can do it. It’s a matter of time and money” before more patients see improvements.

Julia’s first symptom was a cough that worsened. Her mom recalls, “It took several months to actually figure out she had CF. I was devastated, primarily because I was not very well educated on the disease.”

The baby was hospitalized for two weeks at Cincinnati Children’s Hospital Medical Center.

As Julia’s condition improved, the parents learned how to care for her. They performed 25-minute manual chest therapies three times each day. “We patted her fairly hard on different areas of the lungs for two minutes a spot.” They also pulled capsules apart to sprinkle the tiny grains of medication on applesauce so that sticky stomach mucus could be broken down.

Life got easier around the time the toddler turned 2. She was big enough to begin using Hill-Rom’s The Vest two to three times daily. Once the vest, which looks like a life jacket, is inflated, it is hooked up to a machine for 24 minutes each time, puffing air against the girl’s body to loosen mucus. She also was able to swallow capsules. Now the Sunman Elementary School second-grader takes about 30 pills a day.

On a high-calorie, high-protein, high-fat diet, “Julia eats 50-75 percent more calories than others kids her size,” Bulach says. “The nutrients don’t absorb as well so she has to overcompensate. It’s not easy getting 3,000 calories a day in an 8-year-old!”

Over the years, the girl has undergone outpatient sinus surgeries and had lung samples taken six times. Two summers ago, when Julia’s lung function decreased, she was hospitalized for two weeks again to receive intensive antibiotics and 45-minute chest treatments four times daily. To maintain her health, the student visits specialists there quarterly.

With recent medical advancements, “the CF Foundation is the reason these kids have so much hope,” the mother realizes.

“I don’t think you’ll find a more focused organization on finding a cure. They put so much of the effort in the research ... not treating the symptoms, but for a cure.”

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