Archive for Wednesday, October 6, 2004

Local family seeks cure for genetic disease

October 6, 2004

At first it seems Jodi Bowersox is merely planning an Oct. 24th auction to raise money for the Cystic Fibrosis Foundation.

Then she talks about a "sixty-five roses" quilt she's making, with the help of others, and plans to raffle next year. And Jodi also writes scripts for religious plays, burns them on CDs and sells them to raise money for cystic fibrosis. Her writing includes a children's story book, "A Tale of Two Kitties," which she also illustrated. It, too, is available on CD. Proceeds from her CD book will go to cystic fibrosis foundation, as well.

Jodi Bowersox, left, plans for an Oct. 24 auction to raise money
for the Cystic Fibrosis Foundation. Jodi is pictured with her son,
Traci.

Jodi Bowersox, left, plans for an Oct. 24 auction to raise money for the Cystic Fibrosis Foundation. Jodi is pictured with her son, Traci.

Bowersox glances at her 13-year-old son, Traci, and smiles as she talks about the auction.

"We're going to send it all to the Cystic Fibrosis Foundation for their ongoing research," Bowersox said. "We hope it will someday give us a cure for this thing. They've come up with all kinds of new therapies and new drugs which all help, but that cure remains elusive."

Search for a cure

Bowersox and her family, husband Kevin, and their sons Tristan and Traci, know how elusive the search for a CF cure can be.

Traci, an eighth-grader at Tonganoxie Junior High, was diagnosed with CF when he was 18 months old. Cystic fibrosis is a disease in which a child's lungs, intestines and pancreas become clogged with thick mucous. In the United States, about 3,000 babies are born with CF every year.

Although CF is a genetic disease, the Bowersoxes doesn't know of anyone in their families who have had it.

For a child to have CF, both parents must be carriers, she said. Even then, their children have only a one in four chance of being born with the disease.

"It can be passed on without you knowing it for generations," Bowersox said.

CF symptoms vary from person to person.

Although Traci has symptoms that affect his respiratory system, his disease primarily affects his digestive system. Unless he takes the right medications, some of which are enzymes to help digest his food, Traci's body has difficulty absorbing nutrients.

"You have to eat a lot of calories," Traci said.

His mother added, "The plus side is he gets to eat anything he wants -- high fat, high salt, high calorie."

Along with the every day coping with CF, Traci has had several hospitalizations, as well as surgery to remove his gallbladder because of his cystic fibrosis.

Family creativity

During the mornings, Traci attends school at Tonganoxie Junior High School. And during the afternoon, his mother homeschools him.

The Bowersoxes' family life is a fountain of creativity.

And Buffy and Fiddlesticks, the family's nearly grown housecats, are just a part of all that.

Jody keeps a close eye on their cats and sketches pictures of them. In fact, many of her ideas for her children's storybook came from watching her cats.

But she's not the only creative member of the family.

In his spare time, Traci makes movies. His latest is the third of a series, "Indiana Bum 3."

"I'm Indiana Bum and I ride a stick horse named Patsy," Traci said, grinning. "I ride him down the street."

Indeed, their movie making escapades, which includes Jody, Kevin and Tristan, a senior at Tonganoxie High School, and any friends they can recruit, sound adventurous.

Last week, for instance, Indiana Bum took off on his stick horse, chasing a car down County Road 30.

Of course the family was prepared, complete with Jodi on her walkie-talkie running a real-world traffic watch, and Kevin riding in the trunk of a car filming Indiana Bum as he (riding his stick horse) chased the car.

One scene was filmed in Lawrence.

"I ride the stick horse down the street and do a hand signal and turn into Bucky's," Traci said.

Kevin, who studied filmmaking at Kansas University, wrote the script for the movie. Their film set even included a "warehouse" full of boxes in an area that normally serves as the family's garage.

But in his spare time, Traci likes to play Nintendo, draw or build Web sites for his friends.

Serious condition

The upside of cystic fibrosis is that there are medications to help control the symptoms.

But the downside is, it's a disease that, unless researchers develop a cure for it, drastically shortens life.

"The life expectancy for a child with CF is 35 years," Jodi said. "And half the kids who have it don't make it to that."

That's why Jodi is determined to raise money for the Cystic Fibrosis Foundation.

To prepare for the auction, Jodi and her friends have talked to merchants in Tonganoxie, Lawrence, Leavenworth and Bonner Springs, asking if they'd like to donate goods or services.

And they're willing to accept other donations, such as antiques or collectibles, that people might be willing to part with.

"We were really hoping to find a used vehicle to auction," Jodi said. "We haven't found that yet."

Howard Miller will be the auctioneer at the auction.

And smaller items that are donated may be sold through a silent auction the same day.

Knowing what matters

While Jodi is eager to help raise funds for the CF Foundation, it's ironic that she's not worried about her personal finances.

Though the family has health insurance through Kevin's employer, their co-pay on the many office visits and prescriptions adds up. It's enough, she said, they're unable to take their sons on a vacation.

But it's clear Jodi knows what matters.

She reaches to Traci, gives him a hug and says in her effervescent manner: "What use would a vacation be without my Traci. That's what's important to me."

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