There is nothing more earth shattering as a parent than to hear a doctor tell you your child has an incurable disease. Such was the case for Beverly Krzmarcik, who received the news her infant son Carter was diagnosed with Cystic Fibrosis.
“I think the biggest initial challenge was the shock of it to be honest,” said Krzmarcik, who had already given birth to a healthy daughter prior to the arrival of Carter, her second child.
“I think there was a lot of grieving that you don’t realize happens in the first little while. Just trying to manage the day-to-day medication treatments with the understanding that, as a baby, this was the easiest he was ever going to have it. Every year the treatments get more intense. Life gets more complicated.”
Carter is one of the many children born in Canada with Cystic Fibrosis (CF), the most common fatal genetic disease affecting Canadian children and young adults. The fact there is no cure makes a diagnosis even more impactful to families: of all the Canadians with cystic fibrosis who died in the past three years, half were under the age of 34. The illness is a progressive, degenerative multi-system disease that affects mainly the lungs and digestive system.
In the lungs, where the effects of Cystic Fibrosis are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food.
In addition to the physical effects of the disease, people with CF can develop mental health issues including anxiety and depression. Part of the reason for that is the fact CF sufferers are forbidden from hanging out with one another due to current infection control protocols, making it a very isolating disease. It also makes it difficult to build a supportive community to help those living with CF.
“It’s really a hard disease to build awareness for when you can’t collectively get together as a group of CF patients,” said Krzmarcik. “It’s also one of the most difficult causes to fundraise for because it’s not like diabetes, for example, when people living with the disease can all gather together for a juvenile diabetes event. CF families just can’t do that. There’s only so much you can do because of the infectious protocols.”
The introduction of the clinically proven CF treatment drug Trikafta has been a gamechanger for many CF families.
However, that publicly funded medication is only available to those who meet eligibility requirements in all provinces and territories in Canada. New born screenings that immediately identify the presence of the CF gene has also helped parents better prepare themselves for the moment the symptoms start to impact their child’s life.
In support of CF in the area, Krzmarcik has joined forces with a group of like-minded individuals to present their first annual Cystic Fibrosis Gala, taking place on Saturday April 22nd at Bingemans Conference Centre in Kitchener.
The event is being held to raise money for and awareness of Cystic Fibrosis Canada. The early bird $150 ticket will include a full buffet dinner, silent auction, dancing, and performances throughout the evening by The Windjammers, a 45-piece band that only comes together for charitable causes.
“This is our first time doing this and we’re optimistic about how many tickets we can sell,” she said. “We hope till will be a welcomed replacement for the Princess Ball that used to be held at Bingemans. We’ll shoot for the moon, and if we land on the stars it’s a good start. This will be the first of many big events.”
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