Diagnosed with cystic fibrosis (CF) as a child, she grew up navigating a world where every infection and hospital visit felt like a reminder of her fragility. CF is a progressive, life-limiting genetic disease that causes persistent lung infections, digestive problems and, ultimately, life-threatening complications. Worldwide, more than 80,000 people live with CF; in the UK alone there are over 10,500 people affected.

“I grew up seeing people my age who aren’t here today. That’s the reality of CF. Back then, we didn’t have the drugs that we have now.”

Today, Nicole’s life looks very different. She travels, plans for the future, and, most powerfully of all, she has a child, something she never once believed would be possible.

A Life on the Edge

In late 2019, Nicole became critically ill. A severe flu infection combined with Burkholderia cepacia, a dangerous bacterium for people with CF, caused her lung function to plummet to just 11%. She was admitted to intensive care, struggling to breathe.

“It wasn’t looking good. I genuinely didn’t think I was going to make it. I couldn’t breathe properly. I didn’t think I would walk out of that hospital.”

At that time, a new class of drugs called CFTR modulators existed, therapies designed to treat the genetic root cause of CF rather than simply manage symptoms. But they were not yet widely approved for standard care, and access was limited.

For Nicole, time was running out.

The Power of Research and Belief

Behind the scenes, Professor Damian Downey, a clinician and leading CF researcher at Queen’s Wellcome-Wolfson Institute for Experimental Medicine, was among those pushing relentlessly for access to these promising treatments. Over more than a decade, Queen’s researchers had been at the forefront of developing and testing therapies that improve the function of the defective CFTR protein, the root cause of cystic fibrosis.

Queen’s played a pivotal role in designing trial protocols, implementing outcome measures such as lung function and quality-of-life tools, and building the clinical infrastructure needed to deliver single, double and triple combination therapies safely and effectively.

“Damian fought for us. He pushed so hard for the CF community to get access to these drugs. He never gave up on us.”

That dedication made a difference. The breakthrough drug, Kaftrio (known as Trikafta in the US), a triple therapy combining three modulators, was shown in international trials to address the underlying cause of CF for up to 90% of people living with the condition. It significantly improved lung function, reduced chest infections, and transformed quality of life.

Because of that research and clinical expertise, Nicole was offered a chance that few in her position had ever received.

“When I got the first two tablets, everything changed,” she says. “Within 48 hours, I was back on my feet. I got out of hospital. I could breathe again.”

Nicole became the first person with CF and lung function as low as hers to leave intensive care in this way.

“I’m alive because of that research. I wouldn’t be here without Queen’s. They took a chance on me because the evidence was there.”

From Surviving to Living

Today, Nicole takes Kaftrio routinely, and it has radically transformed her life.

“I’m not just surviving anymore. I’m living. I can plan things. I can look forward to the future.”

She and her partner, Ciaran, now take holidays, enjoy family time, and build a life that once felt impossible.

“There was a time when booking a flight felt impossible,” she says. “Now we talk about holidays like anyone else. That freedom means everything.”

The onset of COVID-19 only highlighted how different her reality had become.

“The CF community had been living like that for years,” Nicole reflects. “Shielding, distancing, being careful. But this time, I finally had a treatment that meant I could face the world.”

A Future Once Thought Impossible

Perhaps the most powerful symbol of this transformation is Nicole’s child.

“For most of my life, I never thought I’d be able to have a baby. Women with CF weren’t expected to live long enough, never mind be well enough.”

When Nicole became pregnant, her medical team were honest about the risks. It was frightening, but it was also a testament to how far CF treatment had come.

“One of the consultants said to me, ‘We were so worried about you, but we can’t believe how well you’re doing,’” she recalls. “That’s because of the research. That’s because of these drugs.”

Holding her child now, Nicole sees the impact of Queen’s research not just on her own life, but on the next generation.

“I have my child because of research. That’s something I never take for granted.”

Impact That Reaches Far Beyond One Life

For Nicole, Queen’s impact is not abstract or academic. It is deeply personal, physical and emotional.

“The simple truth is that I am here and I am breathing because of the work Queen’s has done. Doctors were willing to take a chance on me because the evidence was there. That evidence came from research.”

She is clear that the benefits extend far beyond her own story.

“This didn’t just change my life,” Nicole says. “It gave hope to the whole CF community. We feel like we’ve been given our lives back.”

Changing Lives Through Civic Purpose

Nicole’s story is a powerful example of turning world-class research into treatments that reach patients when they need them most, Queen’s is improving lives, strengthening communities and offering hope where once there was fear.

 

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