Research has changed the quality of life and the prognosis for many diagnosed with Cystic Fibrosis – a condition caused by a genetic mutation that predominantly affects the lungs and digestive system.
One of those positively impacted by research is Abbey. She’s now 26, but after her diagnosis as a baby, doctors told her mum Janine that she would likely only live until she was 15-years-old.
“That was quite confronting as a parent, but the paediatrician said Abbey has the most common form of mutation of the most common genetic disease, so if there is a cure for anything, it will be CF,” Janine recalls.
“Every single birthday cake I had, every wish on a shooting star, the wish has been to find a cure a CF.”
Abbey’s first hospital admission was when she was eight weeks old, and up until she was about ten years old, she had hospital stays every 6 to 8 weeks.
“It was hard work. Manual postural drainage when she was young, nebuliser treatments, I’d put Abbey on my knee and do manual physiotherapy, make her cough and huff and that kind of thing,” said Janine.
“When she got past ten years, she was admitted to the hospital once or twice a year. She was a bit healthier, but there was always underlying failure to thrive, lethargy, she just couldn’t keep up with her peers.”
As she reached adulthood, Abbey transitioned to an adult cystic fibrosis care team in Brisbane, which exposed her to more clinical drug trials. “She always said yes to those trials. Her thinking has always been that if it didn’t help her, it’d help somebody else, or the researchers would know it doesn’t work,” said Janine.
Late in 2022, Abbey started a new clinical trial, and the results she is experiencing are promising.
“The day after she started this drug, she was a totally different person, and I felt like my wish had come true. She felt great, had energy, and wanted to go for a run,” Janine said.
“This has been an amazing transition for Abbey, and to see it is amazing. She has a newfound energy and love for life. It’s given her a life she deserved forever because she hasn’t really lived her life to the fullest.”
Abbey’s aunty Megan is putting on a fundraiser in Seventeen Seventy in May called the Tree Party for The Common Good alongside a local father named Matt, whose son also has Cystic Fibrosis. They hope to raise funds so that vital research into Cystic Fibrosis can continue.
Matt says his teenage son Tyler has fortunately remained fairly healthy during his life, and hospitalised only twice.
“While his diagnosis was quite a shock for his mum and I, we’ve got lots to be happy about. We are so lucky in the scheme of things. He’s pretty much a normal kid, so we try not to fuss over it,” said Matt.
Tyler travels to Brisbane four times a year for check-ups and was also recently placed on a drug trial.
“Both those kids in our families are doing amazingly, as treatments have come such a long way in recent years, but we still don’t have a cure – that is our ultimate goal,” said Abbey’s aunty Megan.
“We just figured that every cent counts towards research, and we also figured that the proof in the research is in the pudding now. All funding will play a vital role in the fight against CF.”
The Tree Party for The Common Good will take place under an iconic mango tree on the foreshore at Air Sea Rescue Park. It will start at sunset on May 6, and along with fundraising for the incredible cause, it will also be a lot of fun with dancing under the stars – with Matt’s band 1770Superjam to headline the show.
“It’s good to share our love of music in a way that we can use it positively and contribute like that. It’s about having the opportunity to use my music, which is my passion, for good,” said Matt.
“I think every penny counts at the end of the day, and it might be a drop in the ocean what we raise, but it’s still something. I think through my personal experience and seeing the advances in treatments and medications – maybe a cure is not that far away.”
“This research can’t stop because of this new drug. We’ve still got to find a cure. If we can stop this disease, that’s the best outcome. These doctors can’t research without the funding,” Janine said.
Click here to purchase tickets for the Tree Party for The Common Good.
To donate to the cause, click here.
Published: 4 April 2023
National Volunteer Week 2023 Australia: Volunteers are instrumental in the impact The Common Good has, and this week we are acknowledging all that they do.
Stein Tronstad is an avid researcher, family man and traveler, dedicated to supporting ICU patients with his latest project, The ICU of the Future.
Daniel, 44, is a loving husband and father of four who was recently diagnosed with silicosis. Fortunately for Daniel, it was identified early during a routine medical check-up. The early diagnosis meant he was a candidate for a Whole Lung Lavage trial being carried out at The Prince Charles Hospital and supported by The Common Good.