Tiverton mum takes on marathon for cystic fibrosis awareness

For Lauren Butler, a 30-year-old from Tiverton, next year’s London Marathon is more than a challenge; it’s a symbol of hope, resilience, and love for her baby girl, Billiee-Mae.

Diagnosed with cystic fibrosis at just three weeks old, Billiee-Mae has inspired Lauren to take on the monumental task of running the marathon to raise funds for the Cystic Fibrosis Trust.

“I spent 4.5 years as a personal trainer, but I aspire to be a paramedic one day.” Lauren says, explaining her passion for fitness started early, but it wasn’t always about running.

“I’ve always been into sports—football, rugby, skiing. When I left school, I got into the gym, and after a year, I really got interested in bodybuilding. I wanted that aesthetic look,” she said.

With the support of Bodyworld Taunton, Lauren began competing. “My first show, I came first and got a British invite. My second show, I came fourth with another British invite. It taught me that no matter what you put your mind to, you can do anything. It gave me so much confidence, and I met amazing people along the way.”

But bodybuilding was just one chapter in her fitness journey. After stepping away from the sport for a few years, Lauren found herself inspired by the runners of the 2024 London Marathon. “I’ve never been a runner, not even a long-distance one, but something clicked. I wanted a new challenge. Raising money for cystic fibrosis made it a no-brainer.”

For Lauren, the decision to run wasn’t just about ticking off a bucket list item. It was deeply personal. “Seeing and learning the challenges that Billiee-Mae faces and will face in life inspired me. She’s a little warrior. If she can get through hard days, getting poorly, then I can get through this marathon.”

Lauren remembers the day her world turned upside down. “When I got the phone call saying something had come up from the heel prick test, I panicked. I thought they were going to tell me she’s just a carrier of the faulty gene. But when the CF nurses came and confirmed my worst fear, my world stopped. The early days were a blur. I’d look at Billiee-Mae and feel so sad—it was the unknowing of what was to come.”

Since then, life has been an adjustment. From managing her three-year-old son alongside Billiee-Mae’s needs to daily physio and hospital stays, the journey has been anything but easy.

“At one month old, Billiee-Mae got RSV from my son. She struggled for weeks and eventually had a two-week hospital stay, which included being put to sleep to get a line in and two different types of antibiotics. Today, I don’t see my sick baby anymore; I see a happy little warrior. She’s the happiest, craziest little girl, and her strength inspires me daily.”

Lauren’s fundraising target for the marathon is £2,500, but her efforts don’t stop there. “In February, I’m doing a half marathon, and in the spring, I’ll be doing a skydive—all to raise money for CF. People can follow my training and donate through my page.”

Her drive is fuelled by the progress being made in CF research. “When I found out Billiee-Mae had CF, I thought the worst. But learning about advancements like the Kaftrio modulator, a miracle drug that’s changing lives, gave me hope. Knowing that people with CF are living longer, fuller lives is incredible. What does ‘Cure Found’ mean to me? Like anyone in my situation, I’d love for them to find a cure. But for now, I want my girl and others with CF to live without limits.”

The Cystic Fibrosis Trust has been a pillar of support for the family. “Their work has led to massive improvements in quality of life and survival rates. They’ve funded research into tackling the underlying cause of CF and treating symptoms like lung infections. It’s amazing.”

Running a marathon while managing Billiee-Mae’s care and raising a three-year-old is no small feat. “It can be difficult, especially when Billiee-Mae is poorly, and we have to do physio twice a day. But I fit my training in either early morning or evening before she goes to bed.”

On tough training days, Lauren finds motivation in her daughter’s resilience. “I remind myself that once it’s over, it’s over, whereas people with CF live with it every day. The Cystic Fibrosis song, ‘I Lived’ by OneRepublic, gets me through the hard moments.”

Looking back, Lauren reflects on the lessons this experience has taught her. “The fear of having a child with CF was greater than the reality. Growth often comes from challenge and change. Training for this marathon has taught me that I can do hard things, especially when it’s for a cause that’s close to my heart.”

Beyond the London Marathon, Lauren hopes to continue taking on challenges for the Cystic Fibrosis Trust. “I love a challenge, but knowing I’m doing it for something that matters makes me want to keep going.”

Her advice to others facing similar challenges is: “Sign up for a challenge. Put yourself around people who are going through the same thing or who understand the diagnosis. It helps so much to not feel alone.”

If you’d like to support Lauren’s journey, you can visit her fundraising page to donate. “I’m also reaching out to local businesses for sponsorship opportunities. In return, I’d be happy to display their logo during training and events.”

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