At age three, New Lambton's Flo Turner appears to be full of life.
Her mum Michelle Turner says Flo is "so alive, normal and happy at the moment".
Her vitality makes it that much harder for her parents to accept that she has the deadliest form of childhood brain cancer.
It's been 11 weeks since Flo was diagnosed with DIPG (diffuse intrinsic pontine glioma).
As the tumour is within the brain stem, it can't be removed through surgery.
Children with the disease, which has no cure, are expected to survive only nine to 11 months after diagnosis.
Her parents Michelle and Cameron remain in shock over Flo's health, but shared their story to mark Brain Tumour Awareness Month.
"We were absolutely devastated for weeks. It was heartbreaking," Mrs Turner said.
A GoFundMe page for Flo has hit its target of $100,000 and is rising.
Flo recently finished six weeks of radiation therapy in Sydney, which relieved her symptoms.
Since then, she has been involved with a clinical trial in Newcastle that uses a combination of two drugs to extend the lives of DIPG patients.
Mrs Turner remains hopeful that the latest medical approaches can help her daughter.
She says much more research funding is needed to help kids like Flo.
Mrs Turner 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. Her mum took her immediately to John Hunter Hospital's emergency department.
Soon after, Flo had an MRI that detected the tumour.
In her bid to raise awareness, Mrs Turner made a touching video of Flo riding her scooter at Bar Beach to the sound of a Harry Styles song.
The video shows Flo - after radiation treatment - riding with joy, smiling and climbing steep stairs at Merewether baths.
"She's amazing, nothing stops her. She rides her bike without training wheels and swims without floaties. For a 3-year-old, that's pretty unique. You wouldn't think she has a brain tumour," Mrs Turner said.
"She rides her scooter to any appointment she goes to, putting a smile on people's faces."
Mrs Turner highlighted the RUN DIPG charity, which University of Newcastle Professor Matt Dun established.
The charity, which has raised about $3 million, will host the Heels to Heal ladies luncheon at Merewether Surfhouse in July.
"We fund research all around the world," Professor Dun said.
Mrs Turner can't understand the lack of federal funding for the disease.
She hopes DIPG will attract a large amount of money from the Medical Research Future Fund, which the federal government set up in 2015.
The fund uses interest from a $20 billion investment to pay for medical research. Only $970,000 has been given for DIPG research.
"DIPG is the leading killer of any disease of kids in the Western world," Professor Dun said.
To see more stories and read today's paper download the Newcastle Herald news app here.
