Veterans of the war on Cystic Fibrosis, young and old, unite

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CORNWALL, Ontario - When Bobby Richer was coming out of the fog of a surgery that had stretched well past 14 hours he knew just two things – he was alive, and he could feel the touch of his mother's hand on his arm.

Richer, then approaching his late 20s, had just undergone a life-saving double-lung and liver transplant. He and two of his older siblings had been ravaged by Cystic Fibrosis (CF) since birth.

In fact his brother Steven succumbed to the disease in 1988 just days before his 20th birthday. Richer's sister Diane was only 12 when she died in 1983.

So when word came, after spending months on a waiting list, that a donor match had been found, Richer said it was with a surreal feeling of calm that he was wheeled into the operating room of a Toronto hospital.

"It felt like I was just going in for an x-ray or something like that," said the Apple Hill resident. "When I was coming out of it, I had a breathing tube in, and they were giving me medication to kind of calm me down.

"But I knew I could feel my mother's hand on my arm."

That was nearly 13 years ago.

As May is Cystic Fibrosis Awareness Month, many patients, young and old, are stepping forward to tell their stories of grappling with the condition that affects one in every 3,600 children in the country.

CF is the most common fatal genetic disease affecting Canadian children and young adults – and there is no cure. The disease primarily attacks the lungs, where thick build ups of mucus making breathing difficult, and lead to other infections.

Richer said his life, up until the surgery, was a strict regimen of physio therapy, oxygen masks and medication. It was when his lung capacity dropped to below 30 per cent that he was put on a waiting list for a lung transplant.

His life now is "pretty much normal."

While every cell in his body carries the gene that causes CF, his lungs and liver do not, because they came from a donor.

"Day-to-day life now is what I guess I would call regular," he said.

That's not the case in the home of Christine Fontaine, who's two boys, Jack (six) and Evan (four) have both been diagnosed with CF.

Fontaine, with a smile, describes her home as "organized chaos" with a pair of young boys who are as active as you will find, especially when the video game console is out, but must also grapple with the symptoms of CF.

She said each day begins and ends the same way – with 25 minutes each of physio therapy to help the young boys expel the mucus that builds up in the lungs.

She said each boy has to be monitored closely, especially during cold and flu season, to ensure their conditions don't lead to severe complications in the event they get sick.

"You really have to pay attention to their breathing," she said. "There are a lot of sleepless nights."

She said while her boys are aware they have CF, it's all they’ve known since birth, so they have adapted to the daily regimen of medications and therapy.

"They don’t really ask too many questions," said Fontaine. "To them this is all normal."

The Cystic Fibrosis Great Strides walk is May 26 in Lamoureux Par. The walk begins at the clock tower and registration is at 10 a.m. The walk starts at 11 a.m.

For more information on pledge sheets head over to www.cysticfibrosis.ca.

Organizations: Toronto hospital

Geographic location: Ontario

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