'People don't know very much about it': Regina family raising awareness for cystic fibrosis
REGINA -- A Regina family is sharing their journey with cystic fibrosis during Cystic Fibrosis Awareness month.
Five-and-a-half-month-old Rilyn Hamilton was born with the genetic disease.
“That means her digestive system and lungs and reproductive system and a whole bunch of systems don’t quite function the way they’re supposed to, due to a faulty protein,” said Amy Hamilton, Rilyn’s mom.
As a result, Rilyn must take vitamins and salt every day, and enzymes at every meal.
“And then, last but not least, every day, she does an hour of chest physio, which is percussions on the twelve different spots of her lungs,” said Amy.
Learning about the disease and how to treat Rilyn has been a journey for the first-time parents, but luckily, they have lots of support.
“We meet with our cystic fibrosis team every three months, which is like a doctor, nurse, social worker, physiotherapist and dietician,” said Brett Hamilton, Rilyn’s dad.
Amy also created an Instagram page – called Rilyn’s Roses – to let others be a part of their journey.
“I think a lot of people don’t know very much about it, we didn’t, we didn’t have any idea,” said Amy. “I think, seeing this cute girl on Instagram, people can see what it’s like to have cystic fibrosis or to be parents of someone who is immunocompromised.”
New data from Cystic Fibrosis Canada shows there are more people living with cystic fibrosis in Saskatchewan today than 20 years ago.
According to Cystic Fibrosis Canada’s most recent data from 2019, there are more than 4,300 Canadians living with cystic fibrosis (CF). In Saskatchewan, there are 126 people with CF.
“And that is actually, from the past 20 years, that’s a 27 per cent increase,” said Kelly Grover, president and CEO of Cystic Fibrosis Canada.
Researchers say the increase could be because more people are being tested, and better treatments are allowing people to live longer. Grover said there are now drugs available, that can “transform people’s lives,” but not everyone has access to them.
“In Saskatchewan, we’re meeting with your elected representatives, and calling on them to publicly fund these drugs so that we can make such a great difference for people living with cystic fibrosis,” Grover said.
Cystic Fibrosis Canada is also holding it’s annual fundraising walk - virtually this year - to raise money for research and push for access to the life-changing medication: Trikafta.
“The amazing thing is that, if kids can get it, like Rilyn who hasn’t really seen any effects from her CF yet that we can see, she might never see what some of the people before her have seen,” said Amy.