Fundraiser for Cystic Fibrosis goes virtual Nov. 6

A new drug has been approved in Canada and recently offered to British Columbians through Pharmacare that will change the lives of 90 per cent of those with Cystic Fibrosis.

Karen Kellett, Prince George mother of two, talks about losing her youngest son to the disease as her oldest is now thriving as a result of being involved in a two-year study on the very medication, Trikafta, that has been recently approved for use in Canada.

Cystic fibrosis (CF) is the most common fatal genetic disease affecting Canadian children and young adults. At present, there is no cure. There are many symptoms of CF that mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with destruction of lungs and loss of lung function will eventually lead to death in the majority of people who have it.

Kellett and husband David raised their family in Prince George. Kellett has been volunteering for Cystic Fibrosis Canada since 1985, mostly fundraising and during the last decade focused on advocacy to get drug cost coverage for patients.

The Kellett boys, Peter and Angus, were diagnosed in 1984 at ages two and a half and five years old respectively, when Peter had pneumonia. Once it was discovered in Peter, Angus was tested soon after. Both parents need to have the recessive gene for children to be at risk and Kellett was not aware CF was part of their family genetics at that time. She found out years later that a cousin passed away from CF in 1964. He was only four years old.

The diagnosis came out of the blue, she said. It was a relief to get the diagnosis because at least then the Kellett family had something to work with.

“We didn’t know why Peter had so many infections - Angus had been on antibiotics 11 times in one year,” Kellett recalled the distress that came with not knowing what was wrong with her sons.

Peter weighed only 17 pounds when he was a year old.

“When he was diagnosed at two and a half it was like ‘OK, now we can start making things better’,” Kellett said. “What we didn’t realize was that CF is a fatal disease and at the time of their diagnosis the boys had a life expectancy that gave them a 50 per cent chance of only living until they were 21.”

The boys were considered to each have a moderate case of CF.

“And we thought nope - we’re competent, intelligent parents - we can do everything right and beat the odds and we always just proceeded like that,” Kellett said. “We treated the boys normally. They had a normal upbringing. They were involved with the sports they could do like baseball and we just never thought about the options  - we just thought they were going to live a good long, healthy life and we were just going to make it work.”

To keep the hope alive, the Kellett family created a video demonstrating how they thrived despite the challenges. Cystic Fibrosis Canada distributed the video all over the country, Kellett said.

“I have two sons and my youngest son died from his disease four years ago at the age of 34 and my older son just turned 42 and he’s been involved in Trikafta (new drug) trials,” Kellett said. “He’s very fortunate because he’s been able to take Trikafta for the last two and a half years. It’s as close to a cure as one could hope though it’s definitely not considered to be a cure.”

The positive effects of the drug were felt by Angus (who lives in Vancouver now) within a matter of days, Kellett said.

“People with CF cough up mucus all the time and now he has no cough, his lung function has improved over 20 per cent, he’s learned to swim through Covid and had the energy and the ability to go to a local pool and learn to swim and that was awesome because he’s never been able to do that - swimming under water, holding your breath - that’s something that was never possible so it’s a big bonus - he’s physically more active and gaining weight and getting stronger.”

Unfortunately there is a small percentage of people with CF that Trikafta won’t help and that’s why fundraising for a cure needs to continue, Kellett added.

“We have to make sure that no one gets left behind,” Kellett said.

To help support others in the struggle with the disease, Cystic Fibrosis Canada will host the 6 Feet Away Soirée Encore, a virtual experience of the 65 Roses Gala event, on Saturday, Nov. 6. The event has gone virtual for a second year because of the pandemic, bringing people from across Canada together to support Cystic Fibrosis Canada in its fight to find a cure for CF.

While enjoying the comfort of home guests are encouraged to dress their best for the virtual boutique experience hosted by CBC Vancouver’s on-air personality Gloria Macarenko and Man About Town Fred Lee.

Daniel Wesley will provide musical entertainment including a special musical number for the soirée that he created with help from members of the cystic fibrosis community.

Guests will hear from Canadian families impacted by cystic fibrosis and will have the opportunity to purchase a WestJet Gift of Flight raffle ticket and bid on unique items and memorable experiences through the silent auction which is open now.

This virtual event kicks off on Saturday, Nov. 6 at 6:30 p.m. and will take place via private video conference.

Funds raised from the virtual event will help to fund breakthrough research, quality clinical care, expand resources and support available to the Canadian cystic fibrosis community and help to support Cystic Fibrosis Canada’s work advocating for access to medications for all, including the life-changing medicine Trikafta.

Tickets to this evening of celebration are available on the 6 Feet Away Soirée website at www.65RosesGala.com.