Willy’s story
“I was alone in the ICU, surrounded by doctors and nurses, and they told me my little boy’s heart was failing. They told me Willy probably wouldn't make it.”
Willy was just four when his parents’ world was shattered by the devastating news: he had a rare and aggressive cancer. He was a bright, happy child, full of energy, until that moment changed everything.
“We’d just done a 10km walk the week before, so I thought it was normal for a four-year-old to be tired,” Sarah, Willy’s mum, recalled. “But then, when we were camping, he got a burning fever…”
“I can’t begin to explain how it feels to think you’re about to lose your little boy, your house, your job, every cent of your life savings, and have your family torn apart, all at the same time.” — Sarah, Willy’s mum
Willy’s diagnosis was catastrophic. His parents, Sarah and Jake, learned that the neuroblastoma had already spread throughout his tiny body. He had a 12-centimeter tumour on his adrenal gland, and the cancer had invaded his skull, hips and even his legs.
His chance of survival was just 50%. Sarah remembers the moment they got the news:
“You know, it almost feels like you’re watching yourself being told that news. It’s denial— why us? Why him? But then, why not us? Cancer doesn’t discriminate.” — Sarah
Willy’s parents were matched with Gabi, their Family Support Coordinator. Gabi became their lifeline—offering comfort, strategies to cope and ways to make Willy’s gruelling treatment more bearable.
“I learned that everything I was feeling was normal,” Sarah says. “Gabi cared about our entire whānau. She made sure we never felt alone.”
Family Support Coordinators like Gabi walk alongside each family during their most vulnerable moments, providing one-on-one care that is as unique as every child’s experience with cancer.
Like many families in New Zealand, Willy’s parents are not together. They each experienced the heartbreak and challenges of Willy’s cancer in their own way, so Gabi tailored her care to each parent. Well-supported in their unique needs, they could both give Willy their all.
“I learned that everything I was feeling was normal. Gabi cared about our entire whānau. She made sure we never felt alone.” — Sarah
Willy began his life-saving treatment just days after his diagnosis, enduring six rounds of chemotherapy, radiation, stem cell therapy and surgery. It was a long and exhausting ordeal, made harder by the fact that some of Willy’s family had to uproot their lives to seek treatment in Christchurch, far from their homes.
Willy’s older brother Baillie had to stay behind in Nelson and miss months with his family. “I missed his ninth birthday. I missed so many moments,” Sarah recalled.
By November, as most families were preparing for Christmas, Willy’s life hung in the balance. He had developed a life-threatening infection and needed to be flown to Starship in an emergency air flight.
Willy’s dad Jake remembers that heart-stopping night very well. His son was fighting for his life and needed to stabilise enough to get on the flight.
“I was alone in the ICU, surrounded by doctors and nurses, and they told me my little boy’s heart was failing. They told me Willy probably wouldn’t make it.” — Jake, Willy’s dad
Yet, by some miracle, Willy stabilised just in time to fly.
Willy spent his fifth birthday on a ventilator in the paediatric intensive care unit, fighting for his life. Twice, Sarah and Jake were told to say their goodbyes. Incredibly, after 18 agonizing days in the ICU, Willy’s strength stunned everyone. His recovery was called a miracle by doctors and nurses alike. Just before Christmas, he began to improve. Sarah describes it as a gift beyond measure: “His recovery shocked everybody. He was the talk of the ward.”
Still on a ventilator and just a day before his fifth birthday, he gave his dad Jake the best cuddle he’d ever had.
Support at times like this is crucial. Jake had to work part-time to be there for Willy, and grocery drop-offs from Gabi let Jake keep the focus squarely where it needed to be – on his precious son. For parents of a child with cancer, a little care goes a long way.
“Gabi really is a ray of sunshine. It makes a real difference knowing you are not alone in these experiences. She was amazing and understanding from the get-go.” – Jake
Sarah remembers receiving a surprise grocery delivery from Child Cancer Foundation as well: “It was the best thing. After months of being away, exhausted, we came home to food in the freezer. It was an unexpected gift that kept giving.”
Thanks to the generosity of everyone who donates to Child Cancer Foundation, children with cancer can also apply for development grants. It helps them have meaningful supports in their life, like the bike Gabi helped get for Willy.
“He would bike from Ronald McDonald House in Christchurch to the hospital for every treatment. Then when he got too tired, an electric balance bike helped him keep some independence and thrive instead of being carried or transported to treatment in a pram.” — Jake
Today, Willy is a healthy seven-year-old, free from cancer, enjoying school and playing with his big brother Baillie. But Sarah and Jake know the journey isn’t over. The risk of cancer returning remains.
