News From Terre Haute, Indiana

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May 23, 2011

Fundraisers hope to make strides against cystic fibrosis (See VIDEO)

TERRE HAUTE — A rain shower may have dampened their clothes, but it couldn’t diminish the enthusiasm of this year’s participants in the Wabash Valley Great Strides Walk, which had its best turnout ever.

The walk, which raises funds for cystic fibrosis, took place at Deming Park. As of Sunday afternoon, the event had raised $46,656, but more donations will be coming in, said Teresa Huxford, one of the organizers, whose son, Justin, has cystic fibrosis.

The amount raised far surpassed the $35,000 goal. Also, at least 350 people participated, the event’s best turnout ever.“All of us on the committee were so emotional after everyone left,” Teresa Huxford said. Seeing hundreds of people support the cause “was overwhelming.”

Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide).

A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

n clogs the lungs and leads to life-threatening lung infections; and

n obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.

Among those attending Sunday’s event was Jamie Bozarth, whose daughter, 21-year-old Lacie, has CF. “We’ve got to find a cure. There are so many kids out there affected by this,” she said.

Lacie has had eight sinus surgeries and must have medication and treatments, but otherwise she’s healthy, her mom said. Lacie works and attends college.

“We’re so close to finding a cure. We’ve got to keep bringing that money in,” Jamie Bozarth said. She described Sunday’s turnout as “awesome.”

Also attending Great Strides was Kierstin Ritchey, 11, who has cystic fibrosis. “Every day I have to get up in the morning before I go to school and have a [breathing] treatment, and at night I have to do it, too,” said Ritchey, who attends Van Duyn Elementary in Vermillion County and enjoys participating in dance.

“I sometimes feel that I’m different from everybody and I don’t like it,” she said.

Her family and friends formed a team and wore shirts that said, “Kierstin’s Krew.”

“If we don’t raise the money then we can’t find a cure,” Kierstin said.

Her mother, Bonnie, said Kierstin understands how serious the disease is. “She doesn’t like doing treatments but she knows she has to,” Ritchey said. Her daughter also must take medicine before she eats in order to digest the food.

Bonnie Ritchey believes a cure will be found in her daughter’s lifetime, or at least there will be advancements that “make her life a lot easier.”

Sallie Cooper walked on behalf of her daughter, Sierra, who died last July at age 22 from cystic fibrosis. Thirty-three people — one from Wisconsin — were part of the team “Sierra’s Striders” and wore pink shirts that also stated, “Walking with Our Angel.”

The shirt had Sierra’s picture on the front.

“I don’t want children like Kierstin to suffer the way Sierra did. I don’t want any parent to live the nightmare that I lived. It was horrible,” Sallie Cooper said. “I believe in my heart there will be a cure.”

She knows of 10 children in the area with the disease.

Justin Huxford, a Terre Haute North Vigo  senior who has CF, participated in the walk. His cousin, Indiana State University basketball player Jake Odum, helped promote the event and raise awareness about CF.

Having CF “is tough in many ways,” Justin Huxford said.

He’s hoping for a cure, and in the meantime, he’ll keep doing his treatments and staying as healthy as possible. “You can’t ever give up,” said Justin, who plans to attend Vincennes University next fall and major in construction technology.

His team members wore a red T-shirt that said, “Believe.”

CF doesn’t affect the large numbers of people that some other diseases do, so it can be difficult to raise awareness and funding for research, organizers of the Great Strides Walk said. Yet the seriousness of the disease makes raising funds extremely important. About 90 cents of every dollar raised by the Great Strides Walk goes directly to research.

Sue Loughlin can be reached at (812) 231-4235 or sue.loughlin@tribstar.com.

 

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