CORNWALL, Ontario – Justina Jans weeps when she talks about her daughter Gabrielle’s future.
“When you hand your child a death sentence, and they don’t know it, it’s a killer,” she said through tears.
Gabrielle, now seven, was diagnosed four years ago with Cystic Fibrosis (CF). Like most seven-year-olds she bops around and is inquisitive, bright and generally enjoys life.
But she also has to take time on many occasions throughout the day (12 times when it comes to monitoring her breathing) to make sure her body is being cleared of thick mucus that can impede the work of the lungs and digestive system.
Jans feels just a bit guilty when advocating on behalf of CF, and the Great Strides Walk that takes place on Sunday at Lamoureux Park near the clock tower, to help raise funds for life-saving research and care.
“Every disease needs to have a cure,” she said. “But her life expectancy is short.”
Indeed, doctors suggest Gabrielle will reach middle age, depending on how her body adapts to the disease.
Most cases of cystic fibrosis in Canada are now identified through screening tests carried out shortly after birth, before symptoms appear. Gabrielle missed the implementation of the new rules by just a few days, which means her diagnosis came at age three.
Jans said fundraisers like the Great Strides Walk give her hope that new treatment options will be found, to help extend the life of her daughter.
“With new technology, there is hope,” she said.
CF is the most common fatal genetic disease that affects Canadian children and young adults. Half of those who died of the disease in 2013 were not even 35 years of age.
“Cystic Fibrosis Canada urges every Canadian to show support for people battling this vicious disease by joining or sponsoring a participant in CARSTAR’s Great Strides Walk for Cystic Fibrosis Canada,” said Kim Baird, President of the Cornwall Chapter of Cystic Fibrosis Canada.
The walks take place every May during Cystic Fibrosis Awareness Month, when Cystic Fibrosis Canada raises awareness about the disease and raises funds for vital cystic fibrosis research, care and advocacy initiatives.
Registration for the Cornwall event is 10 a.m., and the walk begins an hour later.
Other events include Zumba with Pascale at 10:30 a.m. and a Kid’s Fun Zone sponsored by the Kinette Club of Cornwall.
A barbecue sponsored by the Kinsmen Club of Cornwall is also on tap.
To register and/or make a donation, please visit www.cysticfibrosis.ca/greatstrides.
