Every time Canberra teen Kate Daly sits down to eat lunch with her Radford College school friends, she unwraps a small package taped to the outside of her lunchbox by mum Ellen.
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The package is a set of digestive enzymes Kate, 13, needs to take every single time she eats. They're taped to her breakfast bowl, her lunchbox and to the afternoon tea she has after school.
It's just one of the realities of living with cystic fibrosis (CF), the most common life-threatening genetic condition in Australia. CF affects about 100 Canberrans, with more than 12,000 in the region predicted to be carrying the CF gene.
CF is a problem with the protein that controls the movement of salt in and out of cells. Too much salt causes thick mucus to build up in organs like the lungs, causing infections, and the pancreas, affecting digestion. Kate was a critically ill three-week-old baby at John James Hospital when she was diagnosed.
"She couldn't put on any weight no matter how much we fed her," dad Laurie recalled.
"She was feeding really well but was just fading away - she actually looked like something out of a refugee camp by the time three weeks was up."
Thirteen years later Kate's daily routine includes morning and evening sessions of a hypertonic saline inhaled solution, insulin injections, digestive enzymes and a PEP mask to force her to breathe hard before bed to loosen up the mucus in her lungs. She takes more than 30 tablets a day, and will take about 12,000 tablets in total this year.
But looking at her, she looks like any other Canberra teenager.
"A lot of my friends didn't realise at first that I even had something wrong because CF is all on the inside," Kate said. "You can't really tell from the outside."
An ACT representative swimmer and the former "face" of CF in marketing campaigns nationally, Kate has always been an advocate for young people living with CF.
"I just want Canberrans to know more about CF, because they don't understand it more broadly," she said.
"It's a life threatening disease that needs daily care and we need help from the community."
There is no known cure for CF, and given the severity of Kate's illness, her life expectancy is just 31.
Cystic Fibrosis (CF) ACT's annual Christmas in July fun run is on this Sunday July 30, kicking off at 10am at the Canberra Southern Cross Yacht Club. Adults $35, child (U12) $15 and child (U5) free. All proceeds go to help subsidise the cost of living with CF. Tickets from eventbrite.
