At just 10 months old, Ryder’s life was filled with new adventures. He had recently mastered crawling, his older sister Charlise — affectionately known as “Charlie” — was a lively three-year-old, and their home was alive with joy. Mum, Kelly, was getting ready to head back to work after her maternity leave, while dad, Alan, was working full-time. After enduring months of isolation due to COVID-19 lockdowns, the family was finally re-entering the world.
“We were a happy little family,” Kelly reminisces softly. “Ryder was just a baby beginning to discover life.”
However, just days before Kelly was set to return to work, everything changed.
Initial Symptoms
It started subtly — Ryder was not acting like himself. He appeared fatigued and had a persistent cough. Kelly took him to the doctor, but nothing seemed alarming. Then she noticed something unusual: when Ryder cried, one of his eyes remained open.
“We thought it was odd,” she said. “We even recorded videos to show the doctor.”
That simple yet urgent action would ultimately save her son’s life.
The doctor’s expression turned grave after viewing the footage. “Go to Wollongong Hospital,” he instructed. “And ensure you don’t leave without a scan.”
Kelly’s heart sank. She couldn’t shake the fear that had lingered since her childhood. Her sister had been diagnosed with a brain tumor at the age of two and passed away at seven. “I always feared it could happen again,” she said. “And when I saw Ryder’s expression change, I just knew.”
Receiving the Diagnosis
At the hospital, events unfolded rapidly. Scans confirmed Kelly’s worst fears: a brain tumor. Late that night, a doctor arrived to deliver the news that shattered her world.
Ryder was swiftly transferred to Sydney Children’s Hospital, where Kelly and Alan met a team of specialists led by oncologist Dr. Marion Mateos. “It was all a blur,” Kelly recalls. “We met doctors, surgeons, everyone. Before we knew it, he was scheduled for surgery.”
During the operation, doctors discovered that the tumor was perilously close to the brainstem, entwined around crucial nerves. Complete removal was not feasible. “They said it was in a difficult location,” Kelly explained. “We couldn’t do too much because we didn’t want him to suffer lifelong consequences.”
A portion of the tumor was sent for analysis by the Zero Childhood Cancer Program (ZERO). The results were devastating — Ryder had a rare and aggressive brain cancer known as Atypical Teratoid/Rhabdoid Tumour (AT/RT), caused by a genetic mutation.
The Fight Begins
Following surgery, Ryder faced a new hurdle — vocal cord palsy. He was unable to swallow. “He was completely tube-fed for about two years,” Kelly shared. “He had to relearn how to eat from scratch.”
Chemotherapy commenced almost immediately. Kelly describes it as “brutal.” “We essentially lived at the hospital. We would come home for a few days, then return for weeks. He kept getting so ill.”
At just 14 months old, Ryder underwent radiation therapy under general anesthesia five days a week for six weeks. “They were hesitant to proceed because of his young age,” Kelly noted. “But we had no other choice.”
Throughout this ordeal, Charlie stayed at Ronald McDonald House with her dad, seeing her baby brother only occasionally. “It’s incredibly tough for siblings,” Kelly reflects quietly. “I understand what it’s like — I lost my own sister. So I truly empathize with her.”
A Family’s Resilience
Ryder’s treatment continued for months, filled with both hope and heartbreak. “When you’re living in a hospital, time feels different,” Kelly said. “You’re just surviving one day at a time.”
Gradually, the scans began to reveal something remarkable — the tumor was shrinking.
In February 2023, doctors conducted a “second look” surgery to assess what remained. When the results were revealed, Kelly broke down in tears. “They said everything they removed was dead tissue,” she said. “The tumor was gone.”
After completing chemotherapy in August, Ryder began a targeted therapy trial using a drug called Tazometastat, recommended by the ZERO team to prevent the tumor from returning.
“It was reassuring,” Kelly said. “Even though we wanted him to just enjoy life again, it felt good knowing something was still working to safeguard him.”
The Path Ahead
Today, Ryder is three years old — vibrant, strong, and full of life. He still bears the scars of his journey, both visible and hidden, but he’s learning to eat, play, and smile like any other child.
Kelly and Alan approach life “three months at a time,” cherishing every clear scan, every laugh, every moment. “You can’t plan too far ahead,” Kelly states. “We just live for the present.”
She often thinks of her sister, who was lost to a cancer that was poorly understood at the time. “When my sister was diagnosed, my mum inquired if it was genetic. They said no — just bad luck,” Kelly recalled. “Now we know more. I just wish I’d known before Ryder was born. Things could’ve been different.”
Yet she also understands that her story — and Ryder’s — could one day alter another child’s destiny.
“I want people to recognize the signs. To trust their instincts. Because sometimes, that intuition is everything.”
As Ryder plays nearby, laughing as Charlie chases him across the floor, Kelly beams. There are still doctor appointments, therapies, and scans ahead — but there is also joy, love, and brightness.
Her little boy, once so delicate, is a fighter.
And in the stillness of each night, when the house is quiet, Kelly whispers a promise she made the day of his diagnosis — a promise she has honored every single day since:
“Whatever it takes, we’ll fight. And we’ll keep fighting — together.”
