Renee's Fight: Hope for Kids with Childhood Dementia

Niemann-Pick Disease Type C (NPC) is a rare, progressive genetic disorder that slowly takes away a child's abilities and, tragically, shortens their life. Renee Staska, an Adelaide mother of three, knows its weight better than almost anyone. All three of her children, Hudson, Holly and Austy, live with this form of childhood dementia. Rather than letting the diagnosis define her family, Renee has turned heartbreak into action, raising awareness of NPC and campaigning for the research funding that could one day change her children's future.

A mother's strength

Renee's three children, despite the challenges they face every day, bring immense joy to her life. "Hudson is chilled out and empathetic. Holly is fiery and strong-willed. Austy is the sweetest," she says with obvious love. Even with NPC casting a long shadow, Renee draws strength from her children's personalities and their refusal to be defined by the disease.

She doesn't sugar-coat what NPC does. "It starts with ADHD-like symptoms, then causes cognitive changes, memory issues and fatigue," Renee explains. "Eventually, children with NPC lose the ability to walk, talk, and even recognise loved ones." The progression varies from child to child, but the disease often claims young lives far too soon.

What childhood dementia really means

NPC is one of more than 100 rare genetic conditions grouped under the term childhood dementia. Most Australians have never heard of it, yet the numbers are confronting. The Childhood Dementia Initiative's State of Childhood Dementia in Australia 2024 report found that around 91 young Australians die from childhood dementia each year, roughly the same number as die from childhood cancer, while research into childhood dementia receives only a fraction of the funding. That gap is exactly what Renee is fighting to close.

Support that gives a family room to breathe

Caring for three children with a progressive condition is relentless, and Renee learned early that no one was going to fight for her kids harder than she would. "I want my kids to know they're worth fighting for," she says.

She also learned that the right support makes a real difference. Vana Care works with Renee's eldest, Hudson, and she's generous about what that has meant for her family. "Their support, especially for my eldest, Hudson, has been incredible," she says. Hudson gets one-on-one community access experiences built around his interests, and Renee gets something just as precious, genuine respite and a little time to catch her breath.

For families in a similar situation, supports like community access and in-home support can carry some of the daily load, so that parents can spend more of their energy simply being mum or dad.

Raising her voice

Since 2022, Renee has been a relentless voice for children living with dementia. She has worked with the media, partnered with the Little Heroes Foundation, shared her family's story publicly and uses social media to spread awareness and push for change.

Her message is simple and urgent. "My ultimate goal is a cure, but that begins with awareness. Please, spread the word. Even if you reach just one person I didn't, we can make a difference."

How you can help

• Share Renee's story. Awareness is the first step towards research funding and, one day, treatments.
• Donate towards research through the Childhood Dementia Initiative.
• If you know a family caring for a child with a serious disability, offer practical help. A cooked meal or an hour of your time matters more than you might think.

Renee, thank you for trusting us to share your story. Hudson, Holly and Austy could not ask for a stronger advocate, and it's a privilege to stand alongside your family.

Jes, Vana Care co-founder

Common questions

What is Niemann-Pick Disease Type C?

NPC is a rare genetic disorder that affects how the body processes cholesterol and other fats inside cells. Over time it damages the brain and other organs, which is why it's classed as a form of childhood dementia. Symptoms and progression vary widely between children, even within the same family.

Does the NDIS fund supports for children with childhood dementia?

Children with significant, lifelong disability can access NDIS supports, and younger children may come through the early childhood approach. Funded supports often include community access and help at home, which also gives parents much-needed respite. Vana Care doesn't provide plan management or support coordination, but if you're unsure where to start we can point you in the right direction.

How does Vana Care support families like Renee's?

We're a registered NDIS provider in Adelaide (registration 4050094069) offering community access, in-home support and supported independent living across Greater Adelaide and nearby regional SA. We match each person with consistent support workers who share their interests, which is exactly what Hudson's supports are built on.

Renee's story stays with everyone who hears it. If you'd like to read more real stories from families we walk alongside, Melissa's story is another honest look at parenting and disability support. And if your own family could use a hand, you can build a personalised quote in a few minutes at Get Support or call our team on 08 7228 6202. We're always happy to talk it through.