Two young Fremantle residents are preparing to support this year’s 65 Roses Day, a major fundraising event for cystic fibrosis (CF) research. Nine-year-old Amelia and 10-year-old Max, both living with the genetic condition, will be at the forefront of the campaign alongside their families.
Living with Cystic Fibrosis
Cystic fibrosis causes thick, sticky mucus to accumulate in the lungs and other organs, leading to infections, permanent lung damage, and sometimes the need for a lung transplant. More than 400 West Australians are affected by the disease. While recent research has improved life expectancy and quality of life, daily management remains challenging.
Amelia and Max must take numerous medications, undergo regular physiotherapy, and make repeated hospital visits. Amelia’s mother, Amanda, noted that fundraising, awareness, and research have provided new treatment options. “We now have choices for the first time,” she said. “We can work with Amelia and her CF healthcare team to decide which modulator will work best.”
Breakthrough Medications
Amelia uses Trikafta, a modulator drug that targets the CF gene mutation, reducing her coughing and improving her quality of life. However, side effects mean it is not tolerated by everyone, and it may not be available for those with rarer mutations. “One positive of Trikafta for Amelia was it helped her body regulate sodium chloride levels, cutting out up to 12 salt tablets a day,” Amanda said. Amelia now takes 20 tablets daily, down from nearly 40 before Trikafta. Her mother hopes she will soon transition to a new drug, Alyftrek, which could further reduce her intake by two tablets a day.
Max, diagnosed at just 10 days old, required yearly operations to monitor lung health until age six. He now takes up to 30 tablets daily, along with inhalers, a nebuliser, and daily physiotherapy. “Every morning starts with breathing exercises, while afternoons are filled with sport and physical activity to help keep his lungs clear,” said his mother, Zoe. “CF doesn’t take days off — treatments still need to happen during school holidays, birthdays, Christmas mornings and sleepovers with friends.”
Fundraising for 65 Roses Day
65 Roses Day, held next Friday, is dedicated to Australians living with CF. Cystic Fibrosis WA (CFWA) aims to sell a record 28,000 roses across the state. Max’s family will volunteer at CFWA’s headquarters in Nedlands to help wrap the roses, while Amelia’s family will sell up to 300 fresh long-stemmed roses at Cockburn Central Bunnings.
CFWA chief executive Lisa Bayakly said that five years ago, only a few West Australians had access to new-era treatments, but now about 80 per cent benefit from them. “However, young people and adults still juggle demanding healthcare for CF and co-existing conditions like CF-related diabetes. With improved life expectancy come new challenges. Young people diagnosed with CF are now planning for futures once thought impossible — considering careers, superannuation, home ownership and retirement planning,” she said.
How to Support
West Swan wholesaler WAFEX will again help supply thousands of roses. Supporters can pre-order a florist-arranged bouquet by May 24 for contactless delivery, purchase a virtual rose via rosegarden.org.au, or buy a real rose stem at stalls in shopping centres and select locations across WA on 65 Roses Day. Locally, roses will be available at FOMO in Fremantle on Friday.
“Every rose purchased represents hope,” Ms Bayakly said. “When you support 65 Roses Day, you’re helping people with cystic fibrosis navigate life with this complex disease — whether that’s accessing treatment, planning their future, or simply knowing they’re not alone. Together, Western Australians can help our CF community continue to thrive.”
