Renee Staska wants more people to understand childhood dementia. When she shared her family’s story with Vana Care in October 2024, her three children, Hudson, Holly and Austy, were living with Niemann-Pick disease type C, also called NPC.
She described their personalities with affection. “Hudson is chilled out and empathetic. Holly is fiery and strong-willed. Austy is the sweetest.”
The diagnosis is part of their lives. So are their interests, personalities and time together as a family.
Speaking about childhood dementia
NPC is a rare genetic condition. For information about the condition and current research, the Childhood Dementia Initiative is a useful place to start. A family’s treating team is the right source of advice about an individual child.
Renee has shared her experience publicly and worked with the Little Heroes Foundation to raise awareness. She wants more attention and research directed towards children and families living with these conditions.
“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.”
Support for Hudson
In the original story, Renee spoke about the support Vana Care provided for her eldest child, Hudson.
“Their support, especially for my eldest, Hudson, has been incredible,” she said.
Hudson’s one-to-one community access was planned around his interests. Having that support also gave Renee some time away from caring responsibilities.
For a family arranging support, those practical details matter. Who will spend time with your child? What do they enjoy? What information does a worker need? How will you stay in touch? You should be able to discuss those questions before anything begins.
Ways to help
Renee’s story is one way to learn about childhood dementia. You can also read information from the organisations above, share reliable resources or support their research and family programs through their official websites.
If you know a family managing a lot of caring responsibilities, ask what would help them. It may be something ordinary, such as a meal or help with an errand, rather than advice they haven’t asked for.
For questions about community access or support at home, you can contact Vana Care. We can discuss the support requested and whether we have suitable workers available. Funding and the support arrangements need to be checked for each person.
