Mokena Family Raises Awareness, Funds For Those With Cystic Fibrosis

MOKENA, IL — There are approximately 30,000 people in the U.S. who have cystic fibrosis, a rare genetic disease that affects the lungs, pancreas and other organs, according to the Cystic Fibrosis Foundation. Two of those 30,000 are young boys who live right here in Mokena.

Hans Christensen is 6 years old. He's a first-grader at Mokena Elementary School. His brother, Jackson Christensen, is 4. He's in preschool. Both of the boys were diagnosed at birth with cystic fibrosis, said Jennifer Christensen, the boys' mother.

Both Hans and Jackson — and the thousands of other people with cystic fibrosis — require multiple treatments per day using an inflatable pneumatic vest that hooks up to a machine. The vest vibrates at different frequencies to break up mucus in their airways.

"Every morning they spend 20 minutes on their vests. And then every evening they do that again before bed," Jennifer said.

They also each require about 10-20 pills per day to help with their digestive system, another effect of cystic fibrosis, Jennifer said.

"Their bodies are not able to properly digest fats and proteins," Jennifer said. "They learned how to swallow whole capsules when they were itty bitty."

But that's not all the boys need. There are also regular visits with a whole cystic fibrosis care team of seven different specialists, Jennifer said, including pulmonologists, dietitians, physical therapists, respiratory therapists and others.

None of the treatments Hans and Jackson need come cheap. Cystic Fibrosis is considered an "orphan disease," meaning that it affects fewer than 200,000 people nationwide, according to the U.S. Food and Drug Administration. Because of this classification, funding for the disease is sparse to non-existent, leaving many people left footing the bill or hoping to participate in clinical trials for treatment.

Jennifer and Josh are working to help others with loved ones with cystic fibrosis by raising awareness of and funds for fighting the disease.

One way the Christensens do this is by participating in the annual South Suburban Great Strides Walk, which benefits the Cystic Fibrosis Foundation. That foundation offers help with insurance, financial, legal and other issues.

"The Cystic Fibrosis Foundation is great in helping families find different resources and apply for different grants and co-pay programs and stuff like that," Jennifer said. "They've been a really big asset."

This year's South Suburban Great Strides Walk is scheduled for 11 a.m. May 7 at Commissioners Park, 22108 S 80th Ave. in Frankfort. Check-in time is 9:30 a.m. About 175-200 people are expected to participate in this year's walk, Jennifer said.

The Christensen's team, Second Wind, has raised more than $5,000 so far.

The Chistensens even host their own fundraising event, Fairways for Airways, at Sanctuary Golf Course in New Lenox. The family's fifth time hosting the event is coming up August 13. That fundraiser also helps benefit the Cystic Fibrosis Foundation, Jennifer said.

"Last year was our biggest event yet. We brought in about $18,000 for the Foundation," Jennifer said. "It's been really fun."

For more information on cystic fibrosis, visit the Cystic Fibrosis Foundation website.

To register for the South Suburban Great Strides Walk, or to make a donation, follow this link.