New Lambton's Cameron and Michelle Turner are devastated to have lost daughter Flo, but hope science finds answers to the disease that took her life.
Flo sadly died at age four, after being diagnosed last year with DIPG [diffuse intrinsic pontine glioma] - the deadliest form of childhood brain cancer.
Children with the disease, which has no cure, usually survive only nine to 11 months after diagnosis.
"She was in a coma for about a month. She passed last Friday - the 12th," dad Cameron Turner said.
"It's heartbreaking. She was taken too soon and didn't deserve any of the punishment that comes with brain cancer."
When she died in her parents' arms, there was "literally rainbows shining through the louvred windows".
Cameron said it was "unfair for Flo, but we don't entertain the idea of why us".
"If you look at it scientifically, there's no point in saying why us. It was part of Flo's body. It's just one rogue cell that mutates undetected and multiples in a critical area.
"The solution will come through science, research and funding. We have donated Flo's tumour to science - the Dun Lab - where it may one day help find a cure."
Despite this, he said it was worth embracing a spiritual perspective.
"We see Flo in nature and beauty. Whenever I go for a run and there's sunlight coming through trees, I'm feeling her," he said.
When they look to the sky at night, they see "a new star resting high above our house".
"That's helping us for sure."
Cameron said Flo was "a force".
"She was very selfless. I have videos of her after she was diagnosed and we were sharing crackers at the John Hunter.
"She'd always give you the bigger half. That was typically Flo.
"She'd share chocolate with you first or give it to her brother Arlo, after not having it for so long. She was an amazing little human."
Cameron and Michelle were watching videos of Flo yesterday and "getting teary".
Michelle made a touching video last year of Flo riding her scooter at Bar Beach to the sound of a Harry Styles song to raise awareness of her condition.
The video showed Flo - after radiation treatment - riding with joy, smiling and climbing steep stairs at Merewether baths.
"She was a little go-getter on her scooter. She even rode it through the hospital corridors," Cameron said.
Family friend Michael Garrod has established a GoFundMe titled, "Flo Turner, family support".
"The Turner family has faced an unimaginable loss. Flo left a profound impact on everyone she met, radiating joy and love," Michael wrote.
Mum Michelle thanked the community for their "love and support".
"Thank you for being our strength. Taking positives out of Flo's passing is a way of living with the grief," she said.
"No one asked for this, no kid deserves this, but with this comes so much appreciation for life, so much love, so much support.
"At least we get the chance to show Flo so much love, a love that many may never see. Caring for her was an honour."
Michelle told the Newcastle Herald last year that much more research funding was needed to help kids like Flo.
She first noticed something wasn't right with Flo when one of her eyes began turning inwards.
Flo then stumbled out their front door as they left for a GP clinic. Michelle took her immediately to the emergency department.
Soon after, Flo had an MRI that detected the tumour.
As Flo battled the disease, Michelle highlighted the RUN DIPG charity, which University of Newcastle Professor Matt Dun established.
She also raised concerns about the lack of federal funding for the disease.
