Childhood dementia kills almost as many kids as cancer but frustratingly little is known about what causes or how to treat the debilitating condition.
The South Australian government on Monday announced a $250,000 funding boost for researchers in the hope of changing that.
Long thought the sole scourge of the elderly, childhood dementia is an umbrella term for a group of genetic disorders that cause progressive brain damage, robbing kids of their ability to talk, walk, read, write, and play.
Adelaide mum Renee Staska has had to live through not one, but three terminal diagnoses.
"I got called up to come into the doctor's office: 'here's the name on a piece of paper, don't Google it because what you'll read is horrific'," she told reporters.
What came next was impossible for her to process. Ms Staska was told her eight-month-old son Austin was unlikely to live past five years old.
"I had this beautiful baby who wasn't showing any signs," she said.
"And of course, you go home and you Google it and you read all these horrific things. I don't think I've ever felt physical heartbreak like that before."
A few months later, she found out her eldest two children had the same condition.
"Yeah, that took a lot of strength to keep on going through those days.
"Childhood dementia is hard enough as an adult to wrap your head around. My daughter wants to captain the Port Adelaide girls team one day and I don't want to be the one that takes the wind out of their sails and tells them that, you know, something's really wrong here."
Ms Staska's kids are among a 2500-strong cohort living with the disease in Australia. Most do not live past the age of 10.
An estimated 91 Australians die with childhood dementia each year, almost as many as from childhood cancer, says Chris McDermott, founding chairman of children's health charity the Little Heroes Foundation.
As part of the boost, the state government will give the foundation an extra $250,000 and it will in turn contribute $250,000 to research.
Professor Kim Hemsley, head of Flinders University's Childhood Dementia Research Group, says researchers have so far focused on Sanfilippo Syndrome but the extra funding will allow them to target other types of childhood dementia, including Niemann-Pick disease.
"We all hope that these disorders will be treated in our lifetime ... but we need more researchers in this field to help us make that happen," she said.
Prof Hemsley said research was being stifled because of a lack of clinical trial capacity and more funding was desperately needed to help move trials from the lab into the real world.
Analysis last year found that out of 54 clinical trials on offer for childhood dementia patients around the world, only two were available to children in Australia.
"Now, that's clearly unacceptable. There are potential treatments out there and patients in Australia should have access to them."
