8/31/16

Family’s fear evolves into a celebration of hope

Like most parents with two kids already under their belt, Paul and Jackie Klein thought they had the whole parenting thing down.

They knew all about the late-night bottle feedings, diaper duty and all of the other routine care that comes with a new baby. But shortly after their third daughter arrived, they learned that raising their newest addition would be anything but routine. 

At two weeks, Maggie’s newborn screening detected a problem. Tests showed she might be a carrier for cystic fibrosis—a genetic disorder that can cause many long-term issues, including severe lung problems.

For the Kleins, it was the first hint that anything was wrong.

Additional tests were performed. And after two more long and agonizing weeks, they received the official diagnosis. Maggie inherited two gene mutations. The one inherited from her mother is the most common, and the other—inherited from her father—is so rare that, at the time, only eight other patients with this combination were known.

Suddenly, they were in brand-new territory.

But they were not alone.

“It was definitely scary,” Jackie said. “We immediately learned everything we could about cystic fibrosis and about Maggie specifically. And then we joined a network of families that are there for each other and can help each other at any time.”

Maggie also began seeing Donald Davison Jr., MD, a pediatric pulmonologist at Carle, with whom the Kleins found a lot of great support.

“The Carle Cystic Fibrosis Clinic is just amazing. … Anything that you need specifically, they will find you help,” Jackie said.

So far, Maggie is doing great. At nearly 6, she has no signs of cystic fibrosis, and the Kleins feel very fortunate.

But they’re determined to help those who are not, turning Maggie’s birthday into an annual fundraising celebration for cystic fibrosis care and research.

For the past three years, Maggie’s Big Bash has raised about $10,000 annually, thanks to donations from friends and family, as well as companies like Walgreens, the Savoy 16 theater, Coca-Cola  and Buffalo Wild Wings, which generously donate supplies for the event.

Last year was the first time the event’s proceeds were earmarked for Carle, raising $13,000 to purchase equipment for cystic fibrosis patients and others dealing with pulmonary issues. In summer 2015, these funds helped purchase a treadmill for the Cystic Fibrosis Clinic.

“We decided we wanted to do something specifically for the clinic and Dr. Davison himself,” Jackie said. “He’s always behind the scenes, but he and his staff are the ones who need to be in the spotlight. They help all of us, so we need to help them.”

As for the Kleins, they deal with each day as it comes, just like any other parents.

“After an emotional roller coaster, we realized we have a happy, healthy, growing baby girl, and we will fight for her and all the other cystic fibrosis patients for as long as we can,” Jackie said.

*This article first appeared in the 2015 Philanthropy Annual Report.