Cure4CF Update
Running for Rory: A Mother’s Journey from Diagnosis to Determination
Rory’s mum Miranda is lacing up her running shoes, she is not just training for a half marathon, she is running for Rory, his future, and a world without cystic fibrosis.
Rory’s Auntie Claire will also run in support of her Nephew.
“Rory is our miracle baby,” she shares. “After more than six years of trying, including fertility treatments and IVF, we were shocked and overjoyed to find out we were pregnant on my 37th birthday.”
Rory is their second child, joining big brother Ben and completing their family in the most unexpected and beautiful way.
A Difficult Start to Life
From the very beginning, Rory showed just how strong he is.
Born with complications, he spent his first week in NICU before facing ongoing hospital visits as doctors searched for answers. During those early weeks, his family watched helplessly as he lost weight and became increasingly unwell.
“At four weeks old, we were told Rory had cystic fibrosis. It was something we were completely unprepared for.”
Those moments were filled with fear, uncertainty, and heartbreak.
But even then, there was strength, and an overwhelming love that carried them through.
Strength, Love and Resilience
Today, Rory is thriving.
“He’s adorably chunky, full of light, joy, and love and always getting up to mischief with his brother.”
By his side every step of the way is Ben, his devoted big brother.
“Ben has the most beautiful bond with Rory. He helps with treatments, keeps him entertained, and shows a level of empathy and compassion far beyond his years.”
Their connection is a powerful reminder of the strength that exists within families facing cystic fibrosis.
Turning Fear into Action
Rory’s diagnosis changed everything.
“I remember feeling completely powerless, like I couldn’t take this disease away from him.”
But alongside that fear came determination.
Determination to fight.
Determination to advocate.
Determination to create change.
“Supporting research became a way to turn that fear into action. There may not be a cure yet, but research gives us hope that one day there will be.”
From Motherhood to Motivation
Becoming a mum to a child with a chronic illness has reshaped everything.
“Resilience isn’t just about big moments, it’s in the daily routines, the treatments, and the quiet strength it takes to keep going.”
Through it all, Rory has been her greatest teacher.
“He’s shown me that resilience can look like joy in the face of challenge.”
Why I’m Running
To channel that strength and determination, she has taken on the HOKA Sydney Half Marathon.
“Running 21.1 kilometres felt like a meaningful way to reflect the challenge Rory faces every day , something physically demanding, driven by purpose, and grounded in hope.”
Training has also supported her through one of life’s most challenging chapters.
“It’s helped my mental health as I’ve navigated acceptance, fear, and uncertainty about Rory’s future.”
Running for Purpose
Running is not easy, and that’s exactly why she chose it.
“Running takes discipline, mental strength, and the ability to keep going when it’s hard, and that mirrors so much of what living with cystic fibrosis looks like.”
Every step has meaning.
“Every kilometre I run is for Rory, and for the fight he faces every single day.”
Strength on the Tough Days
Training brings its own challenges.
“There are moments when my legs are tired and I want to stop. Those are the moments I think about Rory — and it pushes me forward.”
Her mindset is anchored in one powerful phrase:
“There is no cure — yet.”
“That word ‘yet’ carries so much hope. It’s what keeps me going.”
Balancing Life, Family and Purpose
With two children and Rory’s daily care routine, training is a constant juggle.
“It has to fit around everything else, but it’s become something meaningful for our whole family.”
Ben and Rory are her biggest supporters, cheering her on every step of the way.
“It brings me so much joy seeing their faces light up when they watch me train.”
The Power of Community
What once felt isolating has become something incredibly powerful.
“When Rory was first diagnosed, I felt so alone. We didn’t know anyone who truly understood what we were going through.”
But through fundraising and sharing their story, that has changed.
“The support has meant everything, the donations, the messages, the encouragement. It’s reminded us that we’re not alone.”
Running for Change
Through Miranda’s fundraiser, Run for Rory, she is raising vital funds for cystic fibrosis research.
Her goal is $5,000 and every donation brings us one step closer to a cure.
“Research changes lives. It improves treatments, extends life expectancy, and gives families like ours real hope.”
All funds raised support the life-changing work of Cure4CF Foundation.
My dream is that Rory can live a long, healthy life — just like any other child.”
Through every step, every kilometre, and every dollar raised, they are helping make that future possible.
A Message to Others
If you’ve ever thought about fundraising or taking on a challenge for a cause, her message is simple:
Do it.
“Your effort, your story, and your voice matter more than you think. You don’t have to do something extraordinary, you just have to start.”