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24 hours stepping up for Frankie
May 15, 2026
When Harry steps up to the treadmill on Friday 29 May, he’ll be thinking of his daughter Frankie.
“It’s not really about me, it’s about raising awareness,” he says as he limbers up for the hours long challenge alongside his brother Tom.
Frankie lives with MPS Sanfilippo Type A, a form of rapidly progressing childhood dementia that is life-limiting.
As her condition advances, the four-year-old is expected to gradually lose skills many children take for granted, including the ability to walk, talk, sleep and eat. It is this reality that gives purpose to every step Harry is preparing to take.
“We aren’t renowned as the best runners,” Harry says with a laugh.
Still, the brother duo has taken on the Very Special Kids’ 24-Hour Treadmill Challenge to give back to a charity that has walked alongside Frankie, their family and others facing life-limiting childhood illness.
With the support of his workplace, JLL, Harry and Tom are already in the final stretch towards their ambitious $100,000 goal.
“What really matters is what it makes possible,” Harry says.
“Every dollar we’ve raised so far can make a meaningful difference for families like ours. The support from our community has been hugely motivating, and we hope people continue to get behind it and help us finish strong.”
For her parents, Harry and Bella, Frankie’s diagnosis in September 2025 followed months of unanswered questions.
“Call it a mother’s intuition, but Bella always knew that something was up,” Harry remembers. “Frankie just wasn’t hitting milestones.”
When their second child, Freddy, was born, the gaps became harder to ignore. Bella and Harry attended countless doctor appointments, searching for answers for their little girl.
When the diagnosis finally came, it brought heartbreak, but also clarity.
“It didn’t bring relief,” Harry says.
“But at least it helped us understand what we were facing.”
Soon after, the family was referred to Very Special Kids.
They have since accessed respite care at the purpose-built hospice, where nurses and healthcare professionals provide around-the-clock support.
“It’s fantastic having Very Special Kids as a resource,” Harry says.
“Frankie loves performing or playing with the music instruments in the music therapy space. She also loves her trips down the street with the hospice staff for sushi and icecream treats.”
Support extends beyond medical care. The family also receives specialised counseling that reflects the complexity of living with a child’s life-limiting condition.
“Compared to other counselling services, Very Special Kids has a better understanding of what families are going through. It makes it a lot easier to talk about the feelings of grief I’m going through.”
For Harry, that support is personal. It meets Frankie where she is, and wraps around the whole family, adapting as their needs change and ensuring no one is navigating this alone.
“In my eyes it doesn’t feel like palliative care. It feels like support. It feels like respite.”
After being introduced to Very Special Kids, Harry and his brother Tom were keen to find a way to give back.
“I didn’t realise how much Very Special Kids relies on donations” Harry says. “Seeing how much Frankie enjoys it, I wanted to do something.”
Frankie will be cheering on her dad and uncle during the 24-Hour Treadmill Challenge, giving them that extra push to keep going.
“It’ll be pretty difficult not to hold back emotions,” Harry says. “I hope she’s proud of her uncle and father.”
The 24-Hour Treadmill Challenge is about more than endurance. Across 24 hours, individuals, families, businesses and teams come together, each with their own reason for stepping up, united by a shared goal to support children and young people with life-limiting conditions.
It also opens the door for honest conversations, creating space for people to ask questions and better understand what palliative care means in their own communities.
Very Special Kids aims to raise $1 million through the 24-Hour Treadmill Challenge, ensuring that more families like Frankie’s can access the care and support they need, when they need it most.
From 9am on Friday 29 to 9am on Saturday 30 May, the community will come together to make that possible.
To cheer on and support participants visit vsktreadmill.org.au.
