cystic fibrosis

Students reach to catch a ball at Elkridge Elementary's final Hop-Shoot-Jump-a-Thon fundraiser Feb. 16. During its 11-year-run, the event raised about $100,000 to fight cystic fibrosis. (Staff photo by Sarah Pastrana / March 17, 2011)

Nobody can tell Elkridge Elementary School staff that lightning doesn't strike five times in the same place.

During the annual fundraiser last week to honor children at the school with cystic fibrosis, three of whom had coincidentally enrolled as kindergartners in 2000, students raised money by spinning hula hoops, shooting baskets and twirling jump ropes, just as they have done since 2002.

But this year, the staff and 886 students will say good-bye to 10-year-old Joshua Bahrijczuk, the last of five courageous students to graduate from Elkridge Elementary with the life-threatening lung and digestive tract disease over the past 10 years.

With his departure, the annual fundraisers will come to an end.


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"This has been such a wonderful community-based fundraising project," said parent organizer Amy Bahrijczuk of the annual Hop-Shoot-Jump-a-Thons, which have raised $99,000, including the $8,000 raised this year.

The school on Montgomery Road is concluding the targeted campaign kicked off when Joshua's sister, Jodi Bahrijczuk, who is now 16 and a junior at Howard High School, enrolled in kindergarten at the same time as Joshua Berkley and Lauren Cerwonka, whose families have since moved out of the area.

The statistical improbability of having three 5-year-olds with CF was matched by another equally unfathomable fact: Jodi and Joshua's other sibling — a sister, Jamie Bahrijczuk, who followed Jodi to Elkridge Elementary and is now a 13-year-old student at Elkridge Landing Middle School — also has the disease.

Both girls were able to be there for their brother at this year's final fundraiser, which basically was chaos set to blaring music barely recognizable above the students' enthusiasm.

"This is just typical elementary kids' behavior," said Jodi, who, with Jamie, summoned Joshua for a quick photo to remember the day.

"It's been wonderful to work with Elkridge Elementary and it's been a good time for my kids," Amy said, noting all three have been relatively healthy for a few years with few hospital visits for lung or intestinal blockages. "I'd never even heard of cystic fibrosis until I was pregnant with my first child."

'Huge, huge news'

While CF is an inherited illness, neither Amy nor her husband, Bob, have it. But both of them do carry the defective gene that causes it, a fact uncovered through genetic testing during Amy's first pregnancy.

One in 20 people carry the gene, but most aren't aware that they do, explained Suzanne Nolan, senior development director of the Maryland chapter of the Cystic Fibrosis Foundation. Some 30,000 cases of CF have been diagnosed in this country, and Nolan said about 1,000 new cases are diagnosed each year.

In order to be born with cystic fibrosis a child must inherit two copies of the CF gene, one copy from each parent, Nolan said. If both parents are carriers of the CF gene, but don't have the disease themselves, their child will have a 1 in 4 chance of inheriting both defective copies and having cystic fibrosis.

In order for all three of their kids to get CF, both parents had to pass on their defective genes in each of Amy's three pregnancies, though there was a 75 percent chance each time that wouldn't happen, Nolan explained.

"With our ability to beat the odds, I always say we're going to win the lottery big one day," Amy said with a laugh, relying on humor to relieve the stress of dealing with a life-threatening disease.

"I find the more optimistic Bob and I are, the healthier the kids are, so it's worked out for us that way," she said.

Today, thanks to continued research and specialized care, an increasing number of people with cystic fibrosis are living into adulthood and leading healthier lives that include careers, marriage and families of their own, according to the CFF website.

There's additional cause for hope, Amy said, with the approval of a new drug for CF patients just last month, a development she called "huge, huge news."

Kalydeco just received approval Jan. 31 from theU.S. Food and Drug Administrationfor patients who are age 6 or older and who have a specific mutation of the CF gene, according to the CFF website.