How Lorna is Breathing Hope into the Future of Cystic Fibrosis 

For as long as she can remember, Lorna  has lived with cystic fibrosis (CF). Diagnosed at just 24 hours old after being born without signs of life, she has defied the odds time and time again – and continues to do so today. 

“I was born dead for starters,” she says, recalling how doctors performed emergency surgery for meconium ileus (a condition where a newborn’s first stool is abnormally thick and sticky, causing a blockage in the small intestine) at just one day old, and again two weeks later. “The medical team basically sent me home to die. They told my parents to love on me for as long as they could because they weren’t sure how long I would survive.” 

Her parents’ world was shaken. They had already lost one son to what they later learned was CF, and now their newborn daughter faced the same uncertain future. “My parents have never heard of cystic fibrosis, let alone know how to say it,” Lorna explains. “Mom told me the only way she could say it at the start was ‘Sixty-Five Roses.’” 

Diagnosed so young, Lorna’s experience with CF became part of her everyday life. She remembers feeling different from her cousins – having to stop playtime for treatments, sleep in a mist tent, and follow strict routines. 

“When you’re diagnosed that early, you adapt a little better for a while,” she says. “But I couldn’t understand why I was the only one in the family who had to do the masks, the physio, the medication, and sleep in a mist tent.” 

Five years later, her younger brother was diagnosed with CF too. “At least now I didn’t seem so alone in this world dealing with an illness,” she reflects. 

Despite the challenges, her parents instilled a strong sense of determination and normalcy. “I wasn’t allowed to use CF as an excuse,” she says. “I was told that my body required a little extra care and help in order to keep me healthy.” 

Now 65, Lorna has witnessed incredible advancements in CF research and treatment. “There are a few milestones that stand out,” she says, citing the discovery of the CF gene in 1989 and, more recently, the development of gene-modifying therapies like Trikafta. 

“My father was the Equipment Chairman for Cystic Fibrosis Canada back in the day, and my brother and I were the human guinea pigs to try all the new equipment,” she recalls. “We had compressors running 24 hours a day to make sure the air we breathed was clean. I slept in a mist tent until I was 16. Now we have therapy vests, inhalation antibiotics, newborn screening – it’s a completely different world.” 

Sadly, both of Lorna’s brothers passed away from cystic fibrosis – one at just two weeks old, the other at nearly 20. “They would have been living life to the fullest if they were still around today,” she says. “My younger brother wanted to be a scientist or a doctor – maybe even the one to find the cure. He probably would have been involved in the research somehow.” 

Later in life, Lorna also experienced the heartbreaking loss of her adopted son, Austin, who had CF and passed away just before his 25th birthday. “He was such a bright light,” she says. “I like to think he’s with my brothers now – breathing easy.” 

In October 2021, Lorna began taking Trikafta, a breakthrough gene-modifying treatment that targets the underlying cause of CF. The results, she says, have been life-changing. 

“The feeling is surreal,” she shares. “Being able to finally experience what ‘normal’ people feel when they breathe has been very different. To be able to take a deep breath and not go into a coughing fit – it’s absolutely unbelievable.” 

Before Trikafta, Lorna’s energy levels were declining, and her breathing was becoming more laboured. She often needed antibiotics during spring and fall – but since starting the medication, she hasn’t needed hospitalization or antibiotics once. 

“I have more energy, I can keep up with people, and I can finally enjoy simple things – like sitting around a campfire without going into an asthmatic attack,” she says. “My friends and family are amazed by the change. So am I.” 

Trikafta has also given Lorna a new look on life – and more time to spend with those she loves. “My plans for the future are to enjoy life to the fullest, day to day, with my husband, family, and friends – whatever that brings.” 

While Lorna celebrates the progress made, she’s the first to acknowledge that the work isn’t done. “Trikafta is not a cure,” she says. “Not everyone can take it. It’s an emotional roller coaster – we’re so happy for those it helps, but sad for those being left behind.” 

Her message to donors and supporters is full of gratitude:  “To the long-time donors and supporters of Cystic Fibrosis Canada, I’d like to say THANK YOU FROM THE BOTTOM OF MY LUNGS. Without your support, the progress we’ve seen would not be possible.” 

For Lorna, the vision of a future where all Canadians with CF live without limits is no longer a dream – it’s within reach.  “I’m living proof that hope is worth investing in.”