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Storme’s story
February 26, 2026
Storme always drew people in and made them feel part of his world.
An old soul with a cheeky grin, he spoke his mind with fearless honesty and always carried confidence well beyond his years.
Helen first started caring for Storme when he was five years old, and his magnetic personality shone through immediately:
“He was so intelligent, unique and funny…his personality would suck you in, and he just fell into your heart,” she recalls.
“He didn’t care if you were a child, a teacher, a principal, a doctor, a specialist, a surgeon. He just spoke to you. He had no fear and would say it how it was.”
Storme continued to embody these traits, even when life took an unimaginable turn.
It all began with something so ordinary: a runny nose.
What seemed like a minor irritation slowly became something more, leading to months of uncertainty and, eventually, a terrifying diagnosis for nine-year-old Storme.
Esthesioneuroblastoma. A very rare cancer, usually reserved for men in their 60s or 70s.
The severity of his disease didn’t really hit home until palliative care began being discussed.
Very Special Kids made the transition a softer landing, Storme’s mum Helen admits.
“At first it was just a hard no. Then we had another conversation. I didn’t feel like I was being pressured. They just planted a seed,” she said.
After Storme and Helen settled into Very Special Kids House, it quickly became a warm and safe space for them both.
“I used to love when people would visit Storme there. They’d walk in and Storme would say, “Can you sit here and watch me play my PS5?”… They realised it wasn’t sad and depressing and see him having fun and being happy.”
It was a stark change to their hospital memories, particularly when it came to mealtime.
With Storme’s dietary issues, he avoided any hospital meals, which added a lot of pressure on Helen to meal prep for every hospital visit, long or short.
At Very Special Kids, with an in-house cook, it was a huge change.
“Storme would have cravings, sometimes it’d be salty, because with the cancer, it affects your sense of smell and taste and he’d say, “I feel like potato cakes”, she remembers.
“Or they made what they called a cheesy beano. Egg, beans and cheese in a sandwich and Storme would be in the kitchen and love to help.”
In those final weeks of Storme’s life, the hospice quickly became the Ballarat-based families Melbourne home.
“Very Special Kids were probably the most accommodating organisation I dealt with. I was able to sleep in his room with him and have extra space when I needed it to arrange appointments and catch-ups.”
“I knew Storme was being really well looked after and happy and feeling safe,” Helen said.
When it was time to say goodbye, Helen found solace in the care and familiarity of Very Special Kids.
She spent several days in the Balam Balam suite – a private, peaceful space that gave her the time and privacy she needed to be with Storme after his death.
“I have no doubt that was the best for Storme, the environment,” she says.
“I was truly able to be with Storme in those last days. I didn’t have to worry about anything else. Food got put under my nose, people came and left.
“I was just there to be beside Storme. And I don’t know another place that would’ve allowed it that way.”
Looking back, Helen says there’s so much she would share with other families facing the same situation. “I’m a planner, and I thought, ‘Okay, I’d like this, this, and this. This is how I want it to be.’ But when the time came, some things I did differently, and some I didn’t do at all.
“It was good to know these plans were just ideas, and if things changed, that was okay.”
Reflecting on the time since Storme’s death, Helen shared, “I have some really hard days, and it’s really lovely still being able to talk to Very Special Kids…I felt really close, really supported.”
Storme’s memory is never far from Helen’s mind.
“We do a lot of stuff that Storme did,” she says. “He was very competitive and loved playing board games, so we often think about him when we play one now.”
“I’m just really thankful I got the chance to have Storme in my life.”
