Renee Staska’s seven-year-old daughter Holly dreams of one day captaining the Port Adelaide women’s football team.

But time is not on the side of the avid AFL fan, who alongside her five-and nine-year-old brothers, lives with a terminal illness.

“They think they’re the fastest, the strongest, they have huge dreams,” Ms Staska said.

“I don’t want to be the one that takes the wind out of their sails and tells them that something is really wrong here.

“I just think they have every right to fulfil their dreams as much as they can.”

Holly has been diagnosed with Niemann-Pick Type C, a type of childhood dementia.(ABC News: Che Chorley)

The Adelaide siblings have all been diagnosed with Niemann-Pick Type C, which is one of more than 100 genetic conditions under the umbrella of childhood dementia.

According to the Australian Niemann-Pick Type C Disease Foundation, the disease causes an accumulation of cholesterol and other fatty acids in the body’s cells, leading to progressive intellectual decline, loss of motor skills, seizures and dementia.

Most children with the illness die before turning 18.

Ms Staska said her children are already displaying symptoms.

Renee Staska says her family is trying to make the most of every day despite her children’s diagnoses.(ABC News: Rory McClaren)

“They are really struggling to keep up with their peers, they’re struggling to participate in school, reading, writing, concentration,” she said.

“They get sick quite a lot and it takes them quite a long time to rebound.

“But these symptoms are nothing compared to what they have on the horizon.”

Calls for funding answered

The State of Childhood Dementia 2022 report states that about 90 children die in Australia every year from childhood dementia – a similar number of deaths as from childhood cancer.

Despite the high fatality rate, a report released by the Childhood Dementia Initiative last month found the condition received more than four times less government research funding than childhood cancer per patient.

After years of campaigning, researchers in South Australia have received $500,000 from the state government and Little Heroes Foundation charity, to grow childhood dementia research at Flinders University.

Professor Kim Hemsley welcomes the funding for childhood dementia research.(ABC News: Rory McClaren)

“It will allow our research group to grow what we do from single disorder research to multiple childhood dementia research,” Flinders University professor Kim Hemsley said.

“The investment is also going to develop the next generation of childhood dementia researchers, which is incredibly important.

“We all hope that these disorders will be treated in our lifetime, I sincerely hope that’s so, but we need more researchers in this field to help us make that happen.”

SA government stepping in

SA Health Minister Chris Picton said the $250,000 contribution from the state government was a “one-off”, but he was “open to having ongoing discussions with both Flinders University and Little Heroes Foundation”.

“[The] state government generally doesn’t provide research funding, that’s generally done through the NHMRC (National Health and Medical Research Council), but… there’s a relatively narrow amount of money that’s been coming through the NHMRC grant process for childhood dementia compared to other conditions,” he said.

“I think that’s an appropriate reason for us to step in on this occasion.”

SA Premier Peter Malinauskas (second left) says the state government has forked out $250,000 to advance childhood dementia research.(ABC News: Rory McClaren)

The SA Premier Peter Malinauskas said around 150 South Australian children have childhood dementia.

He said the funding contribution from the state government was made following advocacy from One Nation upper house MP, Sarah Game.

“I can’t think of anything more harrowing for a parent than the idea of having a child with dementia,” he said during an at-times emotional press conference.

Little Heroes Foundation CEO Chris McDermott said only about 10 per cent of people know about childhood dementia and more community education was needed.

Renee Staska says her children are displaying symptoms of Niemann-Pick Type C.(ABC News: Che Chorley)

‘We spend a lot of time hugging’

Ms Staska, who first spoke to the ABC about her children’s condition in 2022, described the funding announcement as “life-changing”. 

She said the years ahead were “frightening”, but her family tried to make the most of every day.

“That means saying ‘yes’ to a lot of things and exposing them [the children] to as many life experiences as I can,” she said.

“We spend a lot more time hugging and we spend a lot more time having fun and making memories.

“There are families all over the country just like mine with children who are rapidly regressing and time is not on our side.”