Waikato Hospital is reviewing the case of a four-year-old girl who has just weeks to live after her parents complained she was given inadequate care.
Asia-Lee Taitoko has been diagnosed with one of the most aggressive forms of cancer in her brain - a high-grade malignant stage four glioblastoma, also known as Glioblastoma Multiforme (GBM).
It has now spread throughout her body, despite surgery that removed 80 percent of the tumour, radiation and chemotherapy treatment.
"I can't even describe it, it's not something that you'd want anybody to go through," said her mother Nikki Murray.
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Asia-Lee spent three weeks in Waikato Hospital before her brain tumour was discovered.
She was diagnosed with a range of different viruses and infections as tests were coming back clear.
"Every single doctor was saying something different to the last doctor that had just come in. It started getting stressful and frustrating that their stories weren't all adding up," she said.
Her health rapidly declined and Nikki claims medical staff refused a CT scan.
Asia-Lee's symptoms included severe headaches, vomiting and no appetite.
Her skin changed colour and the personality of the usually bubbly, kind young girl disappeared.
"She actually hated people. She even got to a point where she didn't want me to be around her. She didn't want me to kiss her, she didn't want me to love her or anything."
"It was hard seeing her go through that because I knew that wasn't her and I knew she didn't mean it," says Nikki.
They were told a CT scan would do more damage than good.
As a mother, Nikki knew there was something wrong with her daughter's brain and she refused to listen.
"Doctors know how to do their jobs, but a parent knows when their kid is sick, a parent knows their kid more than a doctor," she says.
Nikki and her fiance, Asia-Lee's dad, Dallas Taitoko demanded a transfer to Starship Hospital in April.
Asia-Lee was given a CT scan right away and was diagnosed with the invasive brain tumour, all within eight hours.
"For us, we were shattered."
"One because we had already pushed and pushed for a CT scan in Waikato and they didn't give it, and two because they were misdiagnosing us, giving us all this wrong information like fluid in her spine, urine infection, just any viruses through her body," Nikki said.
Craniotomy surgery days later only managed to remove 80 percent of the tumour - the rest sits under her main artery, making it inoperable.
She says doctors at Starship told the family, Asia-Lee's tumour was caused by an untreated infection.
"I partly blame Waikato for this, but then I don't. But I do because they could've picked this up earlier and she wouldn't have had the tumour that she now has now," she said.
To make the situation worse, two formal written complaints the family laid to the Waikato DHB, were lost by staff and never filed.
The family is devastated they now have to go through this process again while their daughter lives out her last days.
"Right now I'm going to focus on her because she doesn't have long and [the DHB] can wait. They are going to get what's coming for them."
A complaint will also be laid with the Health and Disability Commissioner.
"Everyone's just so angry, but also hurt that we've now found out [the cancer has spread]."
The Waikato DHB told Newshub it will look into the care she received.
"We are aware that this is a very distressing and sad time for the family," says Ron Dunham Waikato Hospital Chief Operating Officer.
"We are going to work with the family to understand their concerns and have started a review of the case."
It refused to comment any further on Asia-Lee's care or the complaints that were lost, instead referring Newshub to the Ombudsman.
Both Nikki and Dallas have quit their jobs to spend time with their daughter.
The pair have received a lot of support from different charities, families, and their local Piopio Community.
The community has even pulled together to bring the date of Nikki and Dallas' wedding forward from November to this weekend.
"I knew that if she was to go, I'd regret not having her there," Nikki says.
"I don't think I would be able to marry Dallas if she wasn't still here."
Without time on their side, the family are now living day by day.
"I can't even imagine life without her," Nikki says.
Newshub.
