Brandan Chitty and his family were among the first to receive support from Cystic Fibrosis WA — and 20 years on the charity has now made a difference to the lives of thousands.
Cystic fibrosis is a genetic disorder, primarily affecting the lungs but also the pancreas, liver, kidneys and intestine as a result of a build up of thick mucus.
Little Telethon Star Connor Barrett put a spotlight on the disease in 2023 when he shared with West Australians tuning intothe annual fundraiser how it had impacted him.
Brandan’s mum, Hayley Jones, was not even sure how to pronounce the disease let alone know what it was when her son was diagnosed when he was just three weeks old.
“It was daunting because back then we were told good luck if Brandan lives to his teenage years,” she said.
“Over time with new research and medicine now people can live into their 40s and beyond, but back then it was a big shock to us.”
However, knowing CFWA was just a phone call away made things a little bit less scary.
“My daughter Addison was also born with cystic fibrosis, so when the kids had hospital stays CFWA would come see them and give them packs to keep them occupied,” Ms Jones said.
“They bought the kids trampolines to help with physio and since Brandan got older they have helped him with gym passes and registration for sports.
“Even if we are just having a bad time we can always call on them. They are an organisation that has fitted into our family.”
Cystic fibrosis can be isolating, especially in regional areas, as people with the disease limit socialising due to the risk of spreading bugs.
But through the help of ongoing Telethon funding, CFWA provides services to regional kids like Brandan and Addison, who live in York, to help them feel less alone.
“Growing up you think it’s just normal and then you start going to school and realise you’re a bit different. You have to take a lot of tablets while everyone else is running around and having fun,” Brandan said.
“CFWA have been amazing though. They would come out to school every year and do a big talk at the assemblies and even come into our classes to show other students what CF actually is and to teach them about germ spreading.”
Over 20 years, CFWA has been able to expand its Telethon-supported programs to reach more people.
This includes outreach to families and schools in all WA regions, health professionals doing regional visits to ensure families have access to up-to-date information, occupational therapy, and online programs to reduce the isolation of living with CF.
“Telethon’s support has enabled us to grow in response to community need — extending our services and growing our team’s capability and capacity,” CFWA fundraising head Jessica Hollinshead said.
“Support from Telethon Trust and the WA community is vital in helping CFWA make a difference in the lives of those in need.”