Fundraiser blooming across Perth in aid of CF

May is the national Cystic Fibrosis Awareness month, and today is 65 Roses Day, a fundraising initiative for cystic fibrosis in WA.

For only $5 you can purchase a long stem rose at a number of outlets around the City and metropolitan areas and help someone with the inherited disorder.

Make-up artist Alex Bronwyn Ledo, 29, from Atwell was diagnosed with CF at around six-weeks-old, and said it hadn’t been an easy road living with an incurable disease but she has never let it define her.

“I don’t see myself as someone with Cystic Fibrosis, I mean I live with it, but I try not to think about it,’’ she said.

“I get on with my day and don’t let the negative thoughts creep in.”

Cystic fibrosis is a life-limiting genetic disorder that impacts the whole body, but mainly the respiratory system (lungs) and digestive system (pancreas).

Those with CF have thick stick mucus which clogs the tiny air passages in the lung and traps bacteria – leading to recurring infections and blockages.

Over time this causes irreversible lung damage and can lead to sufferers requiring a double lung transplant.

Alex said aside from difficulty breathing, regular hospitalisation and a persistent cough it wasn’t all bad news for CF sufferers.

“Those with CF struggle to gain weight, so I can eat as much as I like and never put on any weight,’’ she said.

“My diet is high in fats and carbohydrates and I’ve been known to put extra butter on my mashed potatoes and lots of gravy,’’ she said.

Alex said while there is currently no cure, modern treatment options aim to slow down progression of the condition which included antibiotics, enzyme replacement capsules, chest physiotherapy, inhalations and regular exercise.

“I’ve had friends with CF who have passed away from complications associated with the disease and it’s just so sad,’’ Alex said.

Alex’s doctors have discussed the possibility of her needing a double lung transplant in the future, but Alex remains optimistic about her future.

“I recently got married and my husband and I would love to have a baby of our own if I can,’’ she said.

“I’m also in the process of opening my own make-up studio, which is something I am very passionate about.

“Alex and I have been best friends for 24 years and she is my biggest inspiration, she really is the epitome of courage and perseverance,’’ Lauren added.

This year, Alex and her best friend Lauren Taylor are appealing to the public to get behind 65 Roses Day for Cystic Fibrosis.