Miley Griffiths was six years old when she was diagnosed with brain cancer.
“We were in disbelief when they told us it was a brain tumour,” Miley’s mum, Lisa Griffiths said.
“So many mixed emotions and questions go racing through your head.”
The lives of the family – including Miley’s dad Greg and brother Egan – were turned upside down overnight.
“The next few hours were a blur, it all went so fast and felt like it wasn’t real,” Mrs Griffiths, of Merewether, said.
They faced difficulties understanding the “medical speak”, the stress of choosing a neurosurgeon and “preparing for surgery scheduled for the next day”.
After a marathon 11-hour surgery, Miley didn’t wake up. She was placed on a ventilator to help her breathe for six weeks.
Mrs Griffiths said the family was shocked to realise during this time that there was a serious lack of understanding in the medical and general community about childhood brain cancer.
“Although the tumour was removed and treatment has finished, Miley still has regular six-month full-body MRIs to detect any tumour regrowth,” Mrs Griffiths said.
Miley, now aged 10, lives with post-operative symptoms and a complex set of obstacles that will create “significant challenges for the rest of her life”.
A Senate committee has this year held an inquiry titled, Funding for Research into Cancers with Low Survival Rates.
Cure Brain Cancer Foundation's submission said brain cancer received less than 5 per cent of national medical research funding for cancer.
In contrast, breast cancer received about 40 per cent of national cancer research funding in 2014, it said.
The committee is due to release its final report at the end of this month.
Miley was diagnosed with brain cancer around the same time as former Knights player Mark Hughes.
Mr Hughes said brain cancer remains the biggest killer of people under 40, including children.
“Treatment protocols haven’t changed greatly in 30 years,” he said.
“Patients have to trust that everything is being done medically to tackle the disease and give them the best possible hope of surviving.
“They deserve the same chance as people with other cancers.”
He had previously urged the federal government to make brain cancer research an urgent priority area.
“We need better support for clinical trials of new drugs, brain cancer researchers and campaigns that raise awareness,” he said.
Campaigning from the likes of Mr Hughes and The Project’s Carrie Bickmore has led the federal government to increase support for the disease.
Earlier this month, it was announced that a $100 million fund would be created to fight brain cancer.
The Australian Brain Cancer Mission fund will aim to find a cure.
The federal government will contribute $50 million, Cure Brain Cancer Foundation $20 million and mining magnate Andrew “Twiggy” Forrest’s Minderoo Foundation $10 million.
A further $20 million is expected to be donated from another philanthropic group.
Mark Hughes Foundation co-founder Kirralee Hughes said the money, to be spent over 10 years, was a “good start”.
“It’s a lot of money, but so much more is needed,” Mrs Hughes, Mark’s wife, said.
“Treatments and research can only improve from here.”
Mrs Griffiths also welcomed the funding, but said: “I can’t believe it’s taken this long for the government to do something”.
Brain cancer was “the deadliest cancer in Australia”.
“If dedicated individuals didn’t push so loudly and relentlessly, I wonder if the government would’ve done anything at all.”
She said the Mark Hughes Foundation had worked “tirelessly in raising brain cancer awareness”.
“They’re doing all they can to raise much-needed funds to promote brain cancer research, heighten awareness and support brain cancer patients and their families in the hope of eliminating brain cancer within our lifetime.
“The lack of understanding into childhood brain cancer is having enormous consequences.
“Funding vital brain cancer research will enable new therapies, treatments and a better understanding of how brain tumours function and, potentially, a cure.”
Mrs Griffiths said her family was “fortunate to still have our little girl with us”.
“We have met and had the pleasure of knowing many families who have shared this horrid disease. Regrettably, we know very few sufferers who have survived.”