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Communities come together to support 2-year-old with cystic fibrosis

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NORWOOD - Claire Nezezon will turn 3 in August, but she has endured more hardship than any child should at her age.

At just two weeks old, Claire was diagnosed with cystic fibrosis — a deadly disease that attacks the respiratory and digestive system, causing lung infections that lead to premature death.

She regularly receives nebulizer treatments, physical therapy and takes pills with pancreatic enzymes to help her digest foods. Other than her treatments, which can last three to four hours a day, Claire leads a “pretty normal life,” her mother, Jessica M. Nezezon said.

“She’s young and very healthy,” Mrs. Nezezon, Norwood, said. “Older patients, teens and those in their 20s, they spend a large portion of their day doing their treatments. That’s something we are prepared to do in the future. Hopefully they will come out with some new drugs to make it easier for her. She is smart, beautiful and everybody loves her.”

Because of her condition, germs can be especially dangerous to Claire. In order to build up her immunity, Claire regularly attends sports games in which her brother, Cory, 12, plays.

The Nezezon family will be one of many family teams across the county who will participate in the Central New York Chapter of the Cystic Fibrosis Foundation’s annual Great Strides at the Dobisky Visitors Center, 100 Riverside Ave., Ogdensburg, May 18.

This is the third year the family has participated in Ogdensburg’s annual Great Strides Walk to help raise money for improved treatments and a cure for CF.

“Each year, Team Claire gets bigger and bigger,” Mrs. Nezezon said. “We have anywhere between 40 to 50 members participating in the walk this year. We have already met our $10,000 goal. We are so grateful to family-oriented companies and organizations in our community, like Brookfield Power, SeaComm in Potsdam and our colleges — SUNY Potsdam and St. Lawrence University.”

Earlier this month, in honor of Claire, St. Lawrence University’s Center for Civic Engagement held “Kick it for Claire” at its Canton campus. Over 500 college students and community members raised over $6,000 for Great Strides in her honor.

For every dollar raised, 90 cents go directly for new research for therapies, treatments and to help find a cure to a disease that directly affects nearly 30,000 adults and children in the U.S. and more than 70,000 people worldwide.

More than 10 million Americans are symptomless carriers of a defective CF gene, according to Jessica Moquin Development Director for the Cystic Fibrosis Foundation for the Central New York Chapter.

A big part of fundraising, Mrs. Nezezon said, is bringing awareness to anyone who will listen. Until her daughter was diagnosed, Mrs. Nezezon admitted she had not heard much about CF.

“I knew a student in elementary school who had it,” Mrs. Nezezon said. “I did a lot of research and met with multiple doctors. At first I was very scared, but we held out a lot of hope for a happy and healthy future for her.”

“Her doctors in Syracuse are hoping there will be a cure found in the next couple of years,” she said. “We want to try to do anything we can to help make that happen.”

Registration will begin at 10 a.m. with the walk beginning at 11 a.m. Refreshments will be provided by Frito-Lay, McDonald’s, Pepsi-Cola Ogdensburg Bottlers and Price Chopper.

To register, visit centralny.cff.org or contact 463-7965.

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