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Callum’s story
May 14, 2025
Callum is a child who is hard to forget.
He has an open heart, gorgeous big blue eyes and long, golden hair that frames his cheeky smile.
Callum also has Sanfilippo syndrome — a rare and cruel form of childhood dementia that is robbing him of his memory, along with his ability to speak and walk.
Very little is known about Sanfilippo syndrome, and there is no cure.
For the past four years, Callum’s mum Sarah has had to watch as day-by-day, little-by-little, her precious boy is losing all the skills he had gained, his memories, along with his ability to talk:
I think about how there was a time when he was able to say, ‘I love you’.
As a parent, you assume your child is always going to be able to say that to you.
Every parent cherishes the first time they hear ‘I love you’ from their child. But Sarah must endure the heartbreak of knowing she has likely heard it from Callum for the last time.
The strain that caring for a child who has a life-limiting condition puts on a parent is unimaginable. The relentless worry, the sleepless nights and nagging uncertainty. And yet Sarah keeps going, putting every ounce of her energy into making sure Callum is living his best life.
“Even though you might be tired and you’re behind on work, even though there might be dishes and laundry, when Saturday morning rolls around, you get to the beach, or you go to the park. With Callum’s syndrome, you never know when it will be the last time.
Whatever it is that’ll make him happy, you just go and do those things. Those are the moments that matter.”
Callum runs at life with open arms and an open heart – and we love having him stay at Very Special Kids House, our children’s hospice. He also loves being here, as the nurses sing songs, read stories and play games with him. And while Callum is with us, Sarah can get the rest she needs and deserves:
After dropping Callum at Very Special Kids for the first time, I went home and had the best night’s sleep I’d had in a long time.
I felt at peace for the first time in years.
We can literally see the change in a parent’s face when they understand what we can offer them here at Very Special Kids – thanks to your support.
We see the weight lift from their shoulders. And then there are tears. Tears of relief, because they realise how special this place is.
“I remember going to the hospice and being blown away by everyone from the nurses to the volunteers — they go above and beyond. It’s like hanging out with family or friends.”
That’s why our hospice, Victoria’s only children’s hospice, provides specialist clinical care as well as respite.
It’s this combination that makes it a unique service, and why parents have such peace of mind leaving their children in our care.
But a hospice is just a building, the magic comes from the people inside of it, and this is why we’re urging you to donate as soon as you possibly can.
Your gift today can help cover the vital ongoing costs of having specially trained paediatric palliative care nurses in our children’s hospice for the next financial year.
While it is more common to find generalist, palliative or paediatric trained nurses; what we require is specific – paediatric palliative care nurses.
So please send a tax-time donation before 30 June, if you can, and help cover the vital ongoing costs of more specially trained paediatric palliative care nurses. You will be helping to support children like Callum, and parents like Sarah.
Together, we can support families like theirs, so they’re able to turn last memories into lasting memories.
