They call it an invisible illness, but Antonia was terrified the first time her young daughter Kenzie started choking because of cystic fibrosis.

“I was driving and she was in [her] car seat, and she started to cough and then she was choking. She was not breathing and she couldn’t clear the mucus. It was very, very scary."

Kenzie is one of the 2026 faces of Jeans for Genes, the iconic fundraising day that supports research at Children’s Medical Research Institute (CMRI).

The outlook for children with cystic fibrosis has improved significantly over the past few decades, but it was still a shock for Antonia and husband Chris when Kenzie was diagnosed through newborn screening.

“We didn't know a lot about cystic fibrosis," Antonia said. “That was the beginning of our journey to figure out what it was and how it would impact Kenzie's life, our lives. Because it's a genetic condition, she's obviously received it from our genes and we've passed it along unknowingly, so there's a layer of guilt, which we will hold for the rest of our lives."

As a baby Kenzie’s treatment for the chronic lung condition involved daily nebulised saline which she fought. Today she can take nine to 10 capsules in the morning, plus other capsules with every meal that allow her body to absorb the fat and vitamins in the food, as well as her daily physio.

At an early age Kenzie developed a lung infection which is extremely common for people with cystic fibrosis. The bacteria that caused the infection are found in everything from playgrounds to water. It can damage the lungs over time and increase the risk of serious illness.

“Any time she gets a sniffle or a cold, we're on edge worrying about whether it’s actually going to get that deep into her chest and get really sick and then whether she'll end up in the hospital again." said Chris.

Chris said the value of research is why they decided to become part of Jeans for Genes, after hearing about the gene therapy work being done at CMRI.

“Research is so important," Chris said. “I think that's the only thing that will give Kenzie and other kids like her an actual proper normal life. There are the challenges with cystic fibrosis and gene therapy and we're really hoping that in her lifetime that there will be a breakthrough.

"The funds that are raised go directly to supporting the people at CMRI that are making a real difference so these kids like Kenzie and all the other kids that have these genetic conditions. They're just like everyone else. We want to make sure that they can get the same quality of life that all the other kids around the world have. That’s what they deserve."

Jeans for Genes is one of Australia’s longest-running charity days and this year it will be held on Thursday 6 August.

Sign up now to fundraise your own way. You can Bake it Blue with a cake stall, get active by walking, running, or skipping or simply wear jeans - just like millions of Australians have done for more than 30 years.