A NEW goal to sell 26,000 roses has been set by Cystic Fibrosis WA (CFWA) in preparation for 65 Roses Day on Thursday, May 22.

The day marks CFWA’s biggest annual fundraising event which helps to fund research and support services such as helping families with treatments and hospital stays.

The money raised would also contribute towards online support groups such as CF Kids Connect.

CFWA said online groups kept people living with cystic fibrosis (CF) safe from cross infections caused by meeting in person.

CFWA chief executive Lisa Bayakly said, “The name 65 roses originates from a small boy’s attempt at saying CF.”

Although people are affected differently by CF, CFWA said it is a genetically inherited condition which mainly affects the lungs and the pancreas in the digestive system.

“It is one of the most common and complex, life-limiting diseases affecting children and adults in Australia and there is still no cure.”

According to CFWA more than 3700 Australians are battling the life-threatening disease, with about 400 of those diagnosed living in WA.

Swan View resident Lillee Keogh was diagnosed with CF when she was only three weeks old, and Lillee’s mum Jade Keogh said it was a tough time up until about two and a half years ago.

“Lillee had her first hospital admission at about six months old and then from there, it was pretty much back-to-back hospital admissions.”

In 2022, Mrs Keogh said Lillee was given compassionate access to Trikafta which wasn’t available on the pharmaceutical benefits scheme, and Lillee needed to meet certain qualifications in order to receive compassionate access.

“Lillee had no quality of life at that point,” she said.

“We were in hospital more than we were out.”

To keep up with her body’s needs, Mrs Keogh said Lillee needed to take up to 50 tablets a day, depending on what she ate that day.

Mrs Keogh said Lillee enjoyed being the light of any room and being in front of the camera.

Ms Bayakly said 65 Roses Day has had a significant impact on CFWA’s ability to support the CF community.

“However, our work is not done,” she said.

“Sadly, there are many people who are still not eligible for existing treatments, and others who have had to stop taking them due to unforeseen side effects.

“We’re working hard in this space to meet changing needs.”

CFWA is accepting pre-orders made by May 18 for a florist-arranged bouquet which would be delivered on 65 Roses Day, for those living in the metro area.

Roses are available for purchase on May 22 at shopping centre stalls, schools and community groups.

For those allergic or unable to visit the stalls, a virtual rose is also available for purchase at rosegarden.org.au where you can watch the garden grow.