OGDENSBURG - Breathing is something that most people take for granted. But for Owen Benjamin Provencher, every breath is precious.
Owen, 4, suffers an incurable genetic disease called cystic fibrosis. Thick, sticky mucus clogs his lungs, making it difficult for him to breathe. The excess mucus also makes it difficult for Owens body to absorb nutrients in his food and depletes his body of salt, putting him at risk for dehydration.
A common cold can be devastating for someone like Owen. In November, he spent two weeks in the hospital and three months fighting illness.
He takes 18 medications and receives at least three hours of breathing treatments daily to help him stay healthy, said Owens grandmother, Nancy Rudiger, Ogdensburg. But to him, its so normal, he doesnt notice.
Since Owen was diagnosed at two weeks old, he has taken a variety of medications. Mrs. Rudiger said that with each new medicine, Owens chance for survival improves.
All the money the Cystic Fibrosis Foundation receives is put towards the research for these drugs, said Mrs. Rudiger. But because the disease is so rare, very little attention is paid to it outside the CF community.
Mrs. Rudiger said she first heard of cystic fibrosis from a fellow colleague at Ogdensburg Free Academy who had a daughter with the disease, but, at the time, she did not comprehend the diseases severity.
Its one of those things, you dont know how terrible it is until it happens to someone you know, said Mrs. Rudiger.
Mrs. Rudiger said raising awareness about cystic fibrosis was one of the reasons why she organized the Great Strides Walk during Mays Great Strides Month in Ogdensburg. This is the second year Mrs. Rudiger has organized the walk.
Last year, the event raised over $18,000 towards cystic fibrosis research with teams from Massena, Norwood, Potsdam, Canton and Harrisville. This year, were hoping to top that, said Mrs. Rudiger.
The Great Strides Walk is Saturday. Registration starts at 10 a.m. and the walk begins at 11 a.m. at the Dobisky Visitors Center, Ogdensburg.
The walk is 1 to 3.5 miles.
Refereshments will be available before, during and afterward.
Of every dollar raised, 90 cents goes towards cystic fibrosis research.
I think it is one of the blessings of living in the north country, Mrs. Rudiger said. People always pull together to help one another.
There will also be a lasagna dinner to benefit cystic fibrosis research from 4:30 to 7 p.m. Tuesday at Methodist Church on Montgomery Street. The dinner is $8 for adults, $5 for children.
For more information about cystic fibrosis and the great strides walk or to make a donation, visit
www.cff.org. To register for the walk contact Nancy Rudiger at 528-0193 or firstname.lastname@example.org.