WA mum lays bare son's struggle with life-threatening disease
Mandurah mum Kailah Macintyre is selling roses at Mandurah Forum on 65 Roses Day this Thursday in honour of her son Dusty, who is battling cystic fibrosis.
The five-year-old boy started on the modular drug Trikafta four months ago which Ms Macintyre said was making a big difference to his quality of life. Dusty Macintyre has been living with Cystic Fibrosis for five years. Credit: Supplied
'He's been a lot better but still wishes he was normal like other kids,' she said.
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'Dusty asks why his mates don't have to do physio or why don't they have to have enzymes and I tell him it's because he is special, and he is a superhero.'
According to Cystic Fibrosis WA there are more than 400 West Australian adults and children battling with the life-threatening disease every day. Dusty's mum will be selling roses at Mandurah Forum on May 22. Credit: Supplied
The money raised from 65 Roses Day will assist CFWA in providing vital support services such as helping families with treatment at home.
It also enables life-changing research, with $2 million recently pledged to fund a WA-based CF research program.
The program is made possible with matched funding through the Western Australian Future Health Research and Innovation fund Co-funding Partnerships Program.
Cystic Fibrosis WA CEO Lisa Bayakly said the name, 65 Roses, originated from a small boy's attempt at saying cystic fibrosis, and was still what some children with CF called their disease.
'It is one of the most common and complex, life-limiting diseases affecting children and adults in Australia and there is still no cure,' she said.
Ms Bayakly said that while the environment was changing, with new drug therapies giving many people with CF a huge boost to their physical and mental health, there's still much more work to be done.
'We're working hard in this space to meet changing needs and the money we raise each year on 65 Roses Day has a huge impact on our ability to continue supporting our CF community,' she said.
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