Lewis has never let cystic fibrosis hold him back from thriving in the great outdoors.

Having a genetic condition that largely affects the lungs, achieving a peak award from Scouts Victoria might have been too loftier a goal. But with the help of medical research, medications and a mountain of resilience, the 11-year-old has achieved the Grey Wolf Award, the highest honour for his age group from Scouts Victoria.

Born with an intestinal blockage, Lewis was airlifted from regional Victoria to Melbourne for emergency surgery where was diagnosed with cystic fibrosis. The condition affects the cells that produce mucus, sweat and digestive juices. It causes these fluids to become thick and sticky, which then plugs up tubes, ducts and passageways.

Mum Justine said with no one else in the family having the condition it came as a huge shock.

Image: Lewis as a toddler on dad Nick’s shoulders with mum Justine. Credit: Nicole Anderson

“The cystic fibrosis diagnosis was heartbreaking at first because we didn’t know it wasn’t a life sentence,” she said. To learn that the condition was very treatable provided us with some comfort.”

With Lewis’ condition being caused by a rare combination of genetic mutations, it meant he was eligible to receive specialised medication on the Pharmaceutical Benefits Scheme (PBS). The treatment proved life-changing, alongside other cystic fibrosis drugs and daily treatments.

“Lewis was just a toddler when he started on targeted PBS medications,” Justine said. Since then, the medications have had a remarkable impact on his lung health.

“We were encouraged early on by his doctors to not keep Lewis in a bubble, so with the help of different treatments, he can still play sport and thrive in outdoor activities.”

Image: Lewis (front) with his brother Owen, mum Justine, dad Nick, sister Mia and sister-in-law Mikayla receiving his Grey Wolf Award from Scouts Victoria

Lewis also plays for his local AFL team and has a passion for camping, fishing, mountain biking and kayaking.

“Lewis is an active, no-nonsense young man, he impresses us every day with his resilience and positive attitude,” Justine said.

Justine said the cystic fibrosis research at Murdoch Children’s Research Institute (MCRI) was transformative and encouraged other families to join clinical trials and programs.

“We have taken part in research before and would do it again in a heartbeat if it helps other children,” she said. The only reason Lewis has access to life-changing medications is because a team of researchers somewhere proved that they work.”

Image: Lewis taking part in a lung function exercise

Lewis said he doesn’t believe cystic fibrosis defined him.

“My lungs feel a lot better because of the treatments, and I don’t really feel different to anyone else,” he said.

Find out more about MCRI’s Cystic Fibrosis research.