Published: May 15, 2008 10:18 am            

WALK: Making strides for cystic fibrosis awareness

Great Strides Walk

What: Cystic Fibrosis Foundation

Where: Widewaters Marina

Date: Sunday, May 18

Time: Noon

For more information call 686-9400 or visit www.greatstrides.cff.org



BY KEELEY SHEEHAN

lockportnews@gnnewspaper.com

Wilson resident Tracy Smith knows the toll cystic fibrosis can take on a family. Her 12-year-old daughter Taylor was diagnosed with the disease when she was 6-months old.

“Initially it’s devastating news to receive, as a new parent, especially if you’re not knowledgeable about CF,” she said.

The Smith family has been able to gain the knowledge to keep Taylor as healthy as possible. Taylor, a sixth grader at Wilson Middle School, is a cheerleader and swims a lot in the summer. She has missed very little school due to CF related issues.

“Kids with CF need to be as physically active as possible. The more active they are, the better they tend to do,” Smith said.

CF patients need constant treatments to stay healthy. Taylor receives daily treatments of a pancreatic enzyme to help maintain her weight, as well as multivitamins and chest physical therapy.

“Because we are on top of her care and monitor her so closely, it helps,” she said.

Her daughter’s diagnosis compelled Smith and her family to become involved in fundraising to help build awareness of CF. On Sunday, they will participate in the Western New York Chapter of the Cystic Fibrosis Foundation’s annual fundraiser, the Great Strides Walk, to be held at noon at Wide Waters Marina.

“We’ve been able to educate the community... it creates a huge support system for these kids,” she said.

Sunday’s walk will be the first CF Foundation walk held in Lockport. They were previously held in Wilson.

“Hopefully it’ll expand and grow and become even bigger, moving it to a bigger community,” Smith said.

The fifth grade at DeSales School to come support their friend Briana Hansen who has cystic fiborsis. Twins Elizabeth and Kristina Connolly, who walked to support Briana for five years, have rallied their classmates and have provided purple "Briana’s Buddies" T-shirts for the group to wear.

“They’re really excited. They got the shirts today,” Cheryl Connolly said Wednesday. “I have 5 children, and I have never seen this strong of a friendship. It is heartwarming. I am so proud of my girls.”

The walk takes place during the CF Foundation’s national walk weekend, with numerous events being held throughout the country.

The CF Foundation is a non-profit organization that works towards finding a means to cure and control CF. The foundation holds fundraisers throughout the year.

“Ninety percent of that money we raise goes to fund the research to work to cure CF,” said Anna-Lesa Calvert, the Special Events Coordinator for the WNY Chapter of the CF Foundation.

CF affects 30,000 adults and children in the US, according to Calvert.

“CF is a genetic disorder. It affects the lungs and digestive system,” she said. “One thing the foundation is proud of is because only 30,000 are affected, the government doesn’t fund any research. All the research done is done through fundraisers that we do.”

Since her daughter’s diagnosis, Smith has seen a lot of progress made in the areas of treatment and care.

“The research that continues, the new drugs and therapies since we’ve been involved is incredible. Some of the money raised goes towards CF care, not only to research the disease itself, but trying to improve the quality of care,” she said. “We now have mandatory CF screening in New York state. There’s been a lot of increased awareness because of the local chapter.”

Smith says they have been very fortunate with Taylor’s health.

“We’re losing kids every day. The lungs end up deteriorating. They become lung transplant candidates,” she said. “As a mom, it’s a place I don’t ever want her to be. That’s why we keep having events and pushing for research.”



Keeley Sheehan University at Buffalo student and an intern with the Union-Sun & Journal.

        

• Click to discuss this story with other readers on our forums.