Latest news with #CFWA
West Australian
21-05-2025
- Health
- West Australian
65 Roses Day to help raise funds for people with cystic fibrosis like six-year-old Beau Shilton
Beau Shilton has spent countless days in hospital, missing out on spending time with his friends at school. But the six-year-old, who has cystic fibrosis, has been given the all clear to leave hospital for one very special reason — 65 Roses Day. Marked on Thursday and run by Cystic Fibrosis WA, the awareness day allows people to buy roses to help fund research and support for those living with the disease. About 400 West Australians have the condition, which primarily affects the lungs but also the pancreas, liver, kidneys and intestine as a result of a build up of thick mucus. Beau was only two weeks old when his parents were told he had CF and would need medication for the rest of his life. He now takes at least 25 medications, does two physio sessions, and uses a nebuliser — a machine that converts liquid medication into a mist can be inhaled directly into the lungs — everyday. 'Cystic fibrosis impacts Beau everyday because there are no rests when it comes to CF,' his mum Ashlie Shilton said. 'Sometimes when he would rather be out playing he's inside doing his treatments and this is when he's well. 'When he's unwell there becomes more. He's only had two full days at school this term and now he will be missing the next fortnight due to being admitted into hospital as he needs IV antibiotics. 'Although he seems and looks like a normal little boy he's got all these extra challenges.' Beau will be able to leave the hospital on Thursday to sell 200 roses at his school, St Elizabeth's Catholic Primary School. Beau said he would be able to sell 'all of them'. The school will also be holding an assembly where his friends will be spreading awareness about the condition. 'It's a great school and to have all his friends understand what he goes through is amazing, his friends look out for him, and they also miss him when he's away,' Ms Shilton said. 'We're always just trying to fundraise for the next best thing and at the moment that is the drug Trikafta — it's helped a lot of children. 'There are still a lot of children waiting to get the modulator drugs that they need to help them so until every person with CF is getting the help they need, we will keep on fundraising and spreading awareness.' CFWA is hoping to sell a record 26,000 roses across the State. A virtual rose can be bought and grown in the online rose garden or buy one of the thousands of roses available from volunteers across shopping centre stalls, schools and community groups this 65 Roses Day.
Perth Now
20-05-2025
- Health
- Perth Now
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. Your local paper, whenever you want it. '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.
