Adelaide Mum Turns Heartbreak into Hope: Renee's Fight for her Children Battling Childhood Dementia
Adelaide, South Australia Niemann-Pick Disease Type C (NPC) is a rare, progressive disorder that robs children of their abilities and tragically shortens their lives. Renee Staska, an Adelaide mother of three, is intimately familiar with the devastation NPC causes. All three of her children – Hudson, Holly, and Austy – live with this form of childhood dementia. With unwavering love and fierce determination, Renee has turned her family's struggle into a force for change, raising awareness for NPC and advocating for vital research funding.
A Mother's Strength
Renee's three children, despite their daily challenges, bring immense joy to her life. "Hudson is chilled out and empathetic... Holly is fiery and strong-willed...Austy is the sweetest," she describes with love. Despite the looming shadow of NPC, Renee finds strength in her children's unique personalities and their unyielding spirits.
NPC's devastating effects are a constant worry. "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 recognize loved ones." While the progression varies, this cruel disease often claims young lives far too soon.
Support and Advocacy
Driven by the knowledge that no one else would fight for her children, Renee became their ultimate advocate. "I want my kids to know they're worth fighting for," she says. Determined to give them every chance, she tirelessly campaigns to raise awareness about NPC and the broader issue of childhood dementia.
Organizations like Vana Care have been essential in this journey. "Their support, especially for my eldest, Hudson, has been incredible," Renee notes. This assistance grants her some respite and allows Hudson enriching one-on-one experiences tailored to his interests.
Raising Her Voice
For the past two years, Renee has been a relentless voice for children living with dementia. She's worked with media, partnered with the Little Heroes Foundation, shared her family's story publicly, and actively engages on social media to spread awareness and ignite change.
A Powerful Plea
"Childhood dementia is the second biggest killer of children in Australia after cancer," Renee stresses, highlighting the urgent need for greater understanding. "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."
to learn more or donate towards research, click here https://www.childhooddementia.org/donate
-Jesse Trout (Vana Care co founder)
