Only a few decades ago, most children with Cystic Fibrosis (CF) didn't survive into adulthood - a reality my own family had to fathom when my cousin was born with the disease almost 30 years ago.
Luckily for us with ongoing research and improved medical treatments he's still around to celebrate his 30th this year - a birthday milestone that wouldn't have been possible without funding.
Seeing people like my cousin live a semi-normal life is the reason why Mandurah resident Haydee Carman holds an event for 65 Roses Day, which raises funds for the 400 people in WA living with CF.
CF is the most common rare disease in Australia, primarily affecting the lungs where it causes a buildup of thick mucus and can become infected, sometimes requiring a lung transplant.
It's caused by a genetic mutation in a gene called CFTR, which occurs when both parents carry the gene. A gene most parents don't know they have until one of their children is diagnosed with CF.
Knowing two families with children that suffer from CF, 65 Roses Day is a fundraiser close to Ms Carman's heart.
"The month of May is Cystic Fibrosis Awareness Month but on May 28 it's 65 Roses Day," Ms Carman said.
"I started this fundraising event in Mandurah a few years ago and now it's blown out to something massive.
"When it all started the kids I know were my inspiration. If that was my kid I would want someone to do the same as I am doing.
"One of the boys is the same age as my oldest boy so I want to see kids like him reach all the same milestones my kids get to reach."
The day will also shed light on how difficult it can be to access life-changing medication that critically ill CF sufferers simply can't wait for.
I want to see kids like him reach all the same milestones my kids get to reach.- Haydee Carman
This comes following the recent announcement that the medication Trikafta, which costs $410,000 per person every year, would not be listed on the Pharmaceutical Benefits Advisory Committee.
That was a blow Ms Carman said was felt across the Australian CF community.
"I know a lot of CF families that are pretty devastated about it. Families are still pushing for it to be recommended for reimbursement because for a lot of people that medicine would be the closest thing to a cure."
For Mandurah families like Michael Gardner's, whose son is diagnosed with CF, funding for vital services is life-altering. Toby is now on Ivacaftor and has been for a number of years. Fundraising and medical science has allowed him to live a semi-normal life.
It was Mr Gardner and his family's worst nightmare in the weeks following Toby's birth. One second he seemed like a healthy newborn baby. The next they were back and forth to the doctors not knowing what was making their child sick.
"No one could really tell us what was wrong. Then the hospital confirmed it was Cystic Fibrosis from the Guthrie test taken at birth and called us in," he said.
"It was pretty crushing. You just have this little baby that cries all the time."
For Toby, his CF and the gene that he was diagnosed with has taken a hit on his digestive system.
"His lung capacity at this current stage is pretty much similar to ours but his digestive system is the one that's taken a hit. He still has a bit of lung damage, which is quite common as CF children get older," Mr Gardner said.
"In years to come his digestive issues could mean diabetes but as far as his lung function goes if he does the right thing with his diet, physical activity and daily treatments when he's older he'll probably get away with just the digestive side of it and not need a lung transplant."
The Mandurah Bridge will shine a light on CF when it turns red on May 28 for 65 Roses Day.
From 10am on Friday, Cool Eats Mandurah on 3/52 Mandurah Terrace will be selling roses with all funds going to vital services and research for children and adults with CF in WA.
Goods from businesses with owners who suffer from CF will also be available on the day.
To find out more about the event visit, 65 Roses Day in Mandurah
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