Aston Heather was eight-weeks-old when he was diagnosed with cystic fibrosis.
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For his parents Heather and Adam, it was something they knew nothing about.
Aston - who also has trachea-bronchomalacia, known as floppy airways - was in Westmead Children's Hospital for 5.5 months, two of which were spent in the Intensive Care Unit.
Ms Heather stayed with Aston, while Mr Heather returned to Dubbo to work, calling back to Sydney every few weeks to visit. Due to COVID-19, no visitors were allowed.
"I was really isolated from everyone. All I had were the people who were in hospital - my CF team," Ms Heather said.
It's that team at the Westmead's Children's Hospital and Cystic Fibrosis Community Care that the Heather family are now raising money for.
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They're taking part in the 65K for 64 Roses Walkathon.
Aston and Ms Heather will walk 21 kilometres across a few days in the coming week. Meanwhile, Mr Heather and some of his work mates are taking on the whole 65 kilometres in one day, on February 20.
Ms Heather estimates it will take about 18 hours.
"I think he really wanted to make it a real challenge to try and raise some awareness," Ms Heather said.
"You hear people come out all the time and say 'oh I knew somebody with that' but people don't really understand that it's lifelong and it does have a big impact."
One in 2500 babies are born with cystic fibrosis. It mostly affects the lungs and digestive system, leading to an abnormal amount of thick and sticky mucus.
"It's a manageable condition. And you might not always see that somebody has it because you don't know that they're necessarily sick. I want people to know that it exists," Ms Heather said.
Usually the walkathon is held in Sydney, however this year it's virtual, allowing participants to take part wherever they can.
"With cystic fibrosis the kids can't actually be near one another. When you have cystic fibrosis you're highly infectious to other people with cystic fibrosis, so you don't really get to meet other families and the kids don't really get to meet other kids with cystic fibrosis," Ms Heather said.
"It's really good to come together even though it's virtual."
The money raised from the event will help other families like the Heathers.
"Some of the positions in our CF team are actually funded by donations so it's really important to us that those who have been there and supported us through the last 12 months continue to be around, because it's really needed," Ms Heather said.
To support the Heather family, head to 65kroses.com and search for Team Aston, or click here.
The team has already raised almost $4000.
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