“You can see the smiles on the kids’ faces when they’re riding, and it’s fantastic to see them doing it. They’re practising coordination, motor planning, independence, and confidence, all at once.”
That’s Leo Gnavi, occupational therapist at Very Special Kids House, Victoria’s only children’s hospice.
He’s speaking about the charity’s adapted bicycle, which has become a favourite among many children who stay at the hospice.
Very Special Kids provides holistic palliative care for children and young people with life-limiting conditions, and tailored support for their families – through life, death, and grief. A team of doctors, nurses, carers, allied health professionals and trained volunteers work together to provide care that is tailored to each child and young person's unique needs.
As a part of this team, Gnavi helps build independence and enhance quality of life. This includes tailoring equipment to meet each child’s complex needs and encouraging their participation in meaningful activities such as play and access to technology.
“My role is about providing opportunities for kids to enjoy being at the hospice and helping ease their transition into a new environment,” he said.
“What we do is very play-based and depends on the kids’ interests, what they want their experience of the hospice to be.
“We really want to help them create positive memories and experience greater independence.”
Very Special Kids is a Victorian charity that provides emotional, clinical and practical support to children and families facing childhood illness, all at no cost to them.
It currently supports close to 800 families across the state – including in rural areas – and last year facilitated 1,823 respite, end-of-life and after death care bed nights at its hospice.
The charity has a huge impact on the children and families it supports.
Gnavi’s role, focused on helping kids stay engaged, active and regulated, is as much about supporting mental health as physical health.
“There’s a lot of research in terms of the impact of being out and about and moving. It has some great benefits on your wellbeing and mental health,” he said.
“The fact we are able to do it in a safe way at Very Special Kids – that we have highly-trained staff and a big, purpose-built and accessible facility – creates an opportunity for the kids to feel good and have fun.”
Gnavi also organises outings for the kids, many of whom may not have been able to make such expeditions before.
“We might do a wheelchair race, or walk to Messina together for an ice cream, or visit Chadstone or the city, or ride the train.
“I think it’s really beneficial not just for their physical wellbeing, but to allow them to learn new skills and feel like they have independence, which is so important at that age.
“These are kids that sometimes don’t get to make many of their own decisions about their lives.
“Allowing them to take some age-appropriate risks in a controlled environment builds up their independence and confidence, and makes them feel like they have a bit of control.”
Gnavi says it’s all about catering to the specific kids he’s looking after at any given time.
“We just want them to have fun, to want to come back,” he said.
“Some of the kids have such a great time, they don’t want to go home. That’s such a highlight of my role.”
But Very Special Kids is also impactful for the families of children with life-limiting conditions, offering counselling, sibling support and bereavement services, as well as the chance to have a breather.
Some of the families, because their children have such complex care needs, have never had a break.
Very Special Kids provides the opportunity for families to relax while their children have somewhere safe and fun to stay.
Additionally, onsite family accommodation is available for families, allowing them to stay close during a respite stay or providing a private space to spend precious time with their child during end-of-life and after death care.
“For families to stay here at the worst time in their lives and be supported, to have the opportunity to create lasting memories with their children – I think that’s a really unique service,” said Gnavi.
United Energy Around the Bay riders, many of whom ride alongside family members, will know both the importance of quality time with loved ones and the power of physical movement.
This year, riders can choose to fundraise for Very Special Kids.
Any funds raised will be used to support children and young people with life-limiting conditions, and their families.
Gnavi is particularly grateful to all the participants who have dedicated their ride to fundraising for Very Special Kids.
“We’d love to support more children and families, and be able to give more kids the opportunity to create new independent memories at the hospice."
“The adapted bike we have is fantastic and one great example of this, it is such a special experience.”
Are you ready to go the extra mile for a very special cause? Sign up to support Very Special Kids at United Energy Around the Bay 2026 at https://raceroster.com/registration/111768/entry?grassrootz=vsk.
Learn more about Very Special Kids at https://vsk.org.au/
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