Renee's three children were diagnosed with a rare form of childhood dementia: 'I don't think I'll ever accept it' - 9Honey

Just to be sure, the worried mum decided she would test her two younger children, Holly and Austin.

Nothing could have prepared her for the nightmare that was to come – Austin and Holly were both also diagnosed with childhood dementia.

Hudson, seven, Holly, six, and four-year-old Austin's diagnosis of Niemann-Pick C is one of 70 diseases which fall under the umbrella of childhood dementia.

"It's pretty awful for your children to have a condition people are almost afraid to talk about.".

While Hudson, Holly and Austin are healthy and thriving kids now, Renee can't help but think about the ticking clock on their young lives.

It's a painful waiting game for the heartbroken mum, who just wants her children to be happy.

In the years since her children's diagnosis, Renee has been hyper-aware of any symptoms or signs of childhood dementia

She says it would be virtually impossible to tell Holly and Austin were suffering this terminal genetic disorder

Statistically, most children with childhood dementia only live until their late teens, so she wants to make enough incredible memories to last a lifetime. 

Megan Donnell, Director and CEO of the Childhood Dementia Initiative, tells 9Honey the umbrella condition of Childhood Dementia is comparable to childhood cancer in terms of survival rates

And the State of Childhood Dementia 2022 report released this month reveals around 90 children die in Australia every year from the genetic condition

"The death rate of childhood dementia is comparable to that of cancer," she says

Megan, like Renee, wants more awareness and advocacy for finding treatment or a cure for childhood dementia.