Finley, Katie, Ashyr and Leigh Maffey. Photo / Katie Maffey
Finley, Katie, Ashyr and Leigh Maffey. Photo / Katie Maffey
The family of an Auckland boy diagnosed with an aggressive form of brain cancer has had to travel to the United States for treatment costing them around $300,000.
Ashyr Maffey, 9, and his brother Finley, 11, have had a “classic Kiwi upbringing, motorbike riding and messing around in thebush” on their rural Āwhitu property, according to father Leigh, 40.
But in late 2024, Ashyr started having severe stomach pains. Leigh, an electrician, and mum Katie, 40, who previously worked as a dietitian, took him to the doctor for blood tests, which came back clear.
Then “things ramped up”, Katie says — Ashyr started vomiting in the mornings and woke up one day with a stiff neck.
Fearing he had meningitis, Katie took him back to the doctor, who told them to go to the emergency room.
“The pediatrician there felt that it was just a neck sprain and gave us a test for giardia and sent us home,” she tells the Herald.
That test came back negative, but the mum of two recalls a nagging feeling that something wasn’t right.
Ashyr Maffey, 9, lives with his 11-year-old brother Finley and his parents Leigh and Katie, both 40, in rural Āwhitu. Photo / Katie Maffey
“I was starting to go to sleep one night and then something in my head said ‘brain tumour’. And then I couldn’t get to sleep, obviously, so I looked up the symptoms of brain tumours... and he met quite a lot of them.”
Ashyr’s parents pushed for him to get a scan, which showed he did have a tumour near his brainstem that had wrapped itself around a major artery. Two days later, he had surgery to remove it.
Then on November 20, the diagnosis came: posterior fossa group A (PFA) ependymoma, an aggressive and rare form of brain cancer.
“Normally, you would just do the surgery and that would be it, but because it’s an aggressive cancer, we need to get radiotherapy after to mop up any potential cells,” Katie explains.
The radiotherapy that would be offered to him in New Zealand is called photon therapy, which as Katie explains, would “radiate his entire brain”.
“So it’s not ideal for developing children’s brains and important organs.”
Specialists recommended proton therapy, a more targeted treatment. However, it’s only available in the US and the UK and needs to be started within six weeks of surgery to be effective. And while Ashyr met the criteria for Government funding for overseas treatment, it would take longer than six weeks to be approved.
“You’re just sort of getting around ‘can my child breathe and speak and eat?’ and that’s the first week — and then you’ve got this window of time where you’re considering your treatment options,” Leigh says.
The Maffeys have travelled to Florida to get proton therapy for their son Ashyr, 9, who was diagnosed with brain cancer in November 2024. Photo / Katie Maffey
“That’ll give you two or three weeks to make an application, but in reality, you have to be in your treatment country two weeks before the treatment starts.
“The window’s so tight and you need to make decisions — you need to plan, you need to contact the airline, insurance and everything. It’s just insane.”
Ashyr was approved for self-funded proton therapy in Florida. His parents then faced the costs of the treatment, travel and taking time off work.
That’s when family friend Terri Smith stepped in and convinced the Maffeys to set up a Givealittle page, which at the time of writing has raised $87,322.
Leigh says they were initially “hesitant” to ask for help — especially as they were still waiting for a final comparison plan from Starship to confirm that proton therapy was the best option. “The idea of putting our situation out to the world was quite a daunting thing.”
“We didn’t know if we were going to make it,” Katie adds. “We only got clearance to fly the day before we left.”
Smith “gently and lovingly” persisted, and now the couple are “so thankful she did”. They packed up and travelled to the US on Christmas Day. The comparison plan didn’t arrive until two weeks ago, confirming they’d made the right decision.
Ashyr has been “amazing” at coping with the treatment, his parents say — so far he hasn’t needed a general anaesthetic each day.
Ashyr Maffey, 9, is excited to get back home to New Zealand and see his friends. Photo / Katie Maffey
With just a couple of weeks of treatment to go, they won’t know if it’s been successful until they’re back in New Zealand for follow-up scans.
Staying at the Ronald McDonald House in Florida, the Maffeys are surrounded by other families in the same boat, including some from Australia who have faced similar obstacles to funding approval — though across the ditch, families can be back-paid for self-funded treatment.
“That’s been quite eye-opening ... a similar story in that doctors weren’t necessarily that forthcoming with how much better proton is, knowing that people would have to find the funds,” Katie says.
“We’re looking now at talking to the [oncology] team and also talking to Government about why aren’t we offered back pay here as well. If a child meets criteria in every single way, why is that not an option? Why is the community funding us?
“It’d be really nice if we could do something to help the systems be better for future children. It could be like a tick box system that would fast-track everything.”
They’ve also raised this issue with their MP Andrew Bayly and the newly-appointed health minister, Simeon Brown.
“People just keep stepping up and doing just wonderful random acts, often not even telling us,” Leigh says.
“The community just keeps caring. And we’re so thankful to our medical team in New Zealand. We’re not happy with the funding system at all, but we’re so thankful to our medical team. The people on the ground are walking angels.”
Katie agrees: “We’ve got a lot to be thankful for.”
You can view and donate to Ashyr’s Givealittle page here.
