Lawn signs honour families affected by cystic fibrosis as fundraising, advocacy move online

More than a dozen lawn signs sway in the wind outside the McDougalls’ home in Regina.

Throughout the month of May, the family has tended to the markers showing the names and faces of people impacted by cystic fibrosis (CF).

“We’ve got all these signs on our lawn to celebrate and keep in mind our CF warriors we’re doing this for,” said Twyla McDougall.

That includes McDougall’s oldest daughter, Ella, who lives with cystic fibrosis.

“There’s a lot of time, there’s a lot of hard work that people don’t see behind the scenes, and that’s what we’re working to find a cure for,” McDougall said.

“It would be nice for Ella to not have the same concerns and the same challenges, and to have her time back just so she can be a 10-year-old girl who gets to play.”

McDougall said Ella undergoes three breathing treatments a day, takes pills to help with digestion and receives an extra 1,000 calories a day through a G-Tube to maintain a healthy weight.

Currently, there is no cure for cystic fibrosis, which is the most common fatal genetic disease affecting Canadian children and young adults.

The disease — which differs in severity from person to person — causes various effects on the body, but mainly affects the digestive system and lungs.

According to Cystic Fibrosis Canada, persistent and ongoing infection in the lungs, along with destruction and loss of lung function, eventually leads to death in the majority of people living with the disease.

There have been medical advances, including therapy drugs like Trikafta, which Cystic Fibrosis Canada claims “could help up to 90 per cent of patients living with cystic fibrosis” in the country.

The organization is calling on Canadian leaders, including the Saskatchewan government, to halt pending changes to the Patented Medicines Price Review Board (PMPRB).

Changes will make it harder to get new medications like Trikafta approved and available, Cystic Fibrosis Canada said.

COVID-19 moves fundraising efforts online

The McDougalls have been using social media for their advocacy efforts, and also to drum up support for the now virtual Walk to Make CF History.

The annual event for Cystic Fibrosis Canada raises money to fund research into a cure and other treatments.

“It’s a do-what-you-can or walk-your-way challenge. So people have been doing all kinds of fun activities to raise funds for cystic fibrosis,” said Rita Steiner, a member of the South Saskatchewan Cystic Fibrosis Chapter.

While challenges have been taking place for months, the virtual event will be officially marked with live-streamed content on May 31.

Steiner said while they had to adapt the walk to accommodate public health guidelines during the COVID-19 pandemic, physical distancing is already a part of living with cystic fibrosis.

“A child with cystic fibrosis needs to be protected from any infections in the community, so they’re always aware of social distancing from other people,” said Steiner, who lost her 18-year-old son Michael to the disease 18 years ago.

Aside from keeping a distance from people who are ill, those living with cystic fibrosis are advised to keep at least six feet apart from others living with the disease.

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“Someone who may have been on antibiotics how many times for that germ, them being close to another person with CF possibly compromises the health of that other person with CF,” McDougall said.

“For me, that’s one of the toughest parts of this, is not having my daughter be able to go and hang out with people who know her same challenge without having to explain it all.”

McDougall said her family has adhered to the public health measures in place to stop the spread of the novel coronavirus, adding it wasn’t a big change from their routine.

“Honestly, this is not something so new for us. These are things we’ve always been concerned with. The side of this that we are so thankful for is that people are now understanding if you’re sick, stay at home,” she said.