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Taking steps for cystic fibrosis

May 14, 2001

Taking steps for cystic fibrosis



By KEVIN CLAPP

kevinc@herald-mail.com

For Trinsy Stone, lists provide order and precision.

A place for everything, and everything in its place.

continued

Faith Stone has cystic fibrosis. No list in the world allows her mother to take care of that.

What Stone, in Shepherdstown, W.Va., and Paula Stout in Smithsburg can do is work to raise money for research into the genetic disease that afflicts their daughters' digestive and respiratory systems.

Faith is 3; Kaelii Stout is 7. Each must take enzymes with each meal so they are able to gain weight. For a half-hour each day, both children must wear black vests hooked up to machines that shake their chests so the mucus sticking to their lungs is loosened.

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"The life expectancy is 32," Stone says, while Faith flutters around the living room wearing a blue "Blues Clues" jumper. "I'm 32, and that's a hard statistic to throw out. It's not time for me, and she's not going to be ready to go either."

Saturday at Morgan Grove Park in Shepherdstown and Sunday at Washington County Agricultural Education Center, walkers will pledge their support for CF research during Great Strides to benefit the Cystic Fibrosis Foundation. It is the debut walk organized by Stone, the second by Stout.

Given a choice, both would shy away from the spotlight. But with only 30,000 CF diagnoses in the country - versus more than 10 million symptomless carriers of the defective CF gene, including 5-year-old Fallon Stone and 4-year-old Regan Stout - they have jumped into the fund-raising fray to give researchers the best chance to find a cure.

In the genes



According to the Cystic Fibrosis Foundation, when two carriers of the defective CF gene have children, there is a 25 percent chance they will have cystic fibrosis, a 50 percent chance they will be a carrier of the defective gene and a 25 percent chance they will be a noncarrier.

"It was a challenge," Stout says of last year's walk, which raised $22,500. Almost 88 cents of every dollar raised is used for research.

"It went, actually, really good. In the first year you learn things you don't want to do the second year," Stout continues. "We thought if we did $10,000, it would be good. When we did our goal, we were shocked."

In Maryland, Cystic Fibrosis Foundation hopes to raise $550,000 this year after collecting $440,000 at eight sites in 2000. Stout and Stone each got their start with Great Strides at the Frederick, Md., event, which last year raised about $67,000.

Keri Calvert, director of special events for the Maryland Chapter of the foundation, says it's no mystery where CF research would be without the effort of people like Stone and Stout.

"Our volunteers make up all our events," she says. "Some of them have relations to CF and some don't, but we couldn't do it without them."

The day after Faith was born, she had a 5-centimeter section of her small intestine removed. But from the outside she is no different than other children her age. Neither is Kaelii, and their mothers say that is one of their challenges: Raising awareness of a disease with few perceptible symptoms that can be misdiagnosed as asthma or pneumonia.

"Although she looks totally healthy, that's due in part to the research and medicines that have come along in the last 20, 30 years," Stone says. "They're so close to having some huge breakthrough. Of course I want a cure, that's the ultimate goal. But in the meantime, I want a control."

Great Strides events include more than a walk. A festival atmosphere, including a silent auction in Shepherdstown, will hopefully create a lure for families to spend a fun day out together.

"Without that money we're raising for research, there's not going to be a cure," Stout says. "Every little bit counts, whether it's $25 or $2,000. It all adds up."

Stout and Stone say their daughters know they have a disease, that the pills and treatments are necessary to preserve their quality of life for as long as possible.

One of the more difficult times for Stout comes at night when she has to rein Kaelii in for daily treatment.

"That's the hard part, telling a kid in the evening that you need to sit down for 45 minutes and do all of your therapy," Stout says. "You have to do it. You just can't say 'screw it.' And every day you don't do it, it's not good for her and her lungs."

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