For 40 years, Very Special Kids has provided holistic palliative care to children and young people with life-limiting conditions and support for their families – through life, death and grief.

When Joseph* was born, his mother was told he wouldn’t live past the age of four. Although she was a nurse and well-versed in the ways of the health system, the constant clinical directions from doctors were overwhelming. As a mother, she needed respite and space to process her son’s diagnosis. 

“She went into a dark spiral because all she heard was well-meaning doctors and experts saying; ‘when you go home, you’ve got to do this for Joseph, you’ve got to install this, you’ve got to bring him in to do that’. It was relentless,” recalls Very Special Kids CEO Michael Wasley. “Then she came to us. We were the first organisation that said, ‘Go and rest. We’ve got this’. We didn’t add to her burden. We took some of it away.”

Creating space when life feels impossible

Assisting parents and palliative children is the very essence of what Very Special Kids does.

For 40 years, this small but mighty Victorian charity has supported children and young people with life-limiting conditions – and the families who love them – through every stage of their difficult journey. Its integrated care model combines counselling, clinical expertise and respite, delivered by compassionate professionals and volunteers who never step back when others have to.

“People prefer to think that palliative care for children just isn’t needed and that kids don’t die,” Michael says. “But it does happen. Our role is to celebrate their life as well as commiserate their death.”

A home away from hospital

Established in 1985 by two families who had lost their sons to leukaemia, and guided by Sister Margaret Noone, Very Special Kids built Australia’s first children’s hospice. Opening its doors in 1996, Very Special Kids House remains Victoria’s only children’s hospice: a place that offers so much more than end-of-life care.

“There’s a common misconception that a hospice is a place where children go to die,” Michael says. “But we celebrate life. The hospice provides 24-hour respite, end-of-life and after death care in a setting that feels warm, creative and personal.”

Unlike hospitals, which focus primarily on medical treatment, Very Special Kids offers holistic, family-centred care that nurtures emotional wellbeing and connection. The charity works alongside, not in competition with, hospitals and medical teams, providing the compassion, continuity and community that clinical settings can’t always offer.

“At its heart, Very Special Kids believes that all children and young people have the right to quality of life, no matter how long or short their life may be.” 

For one mother in Shepparton, that circle of care extended long after her son died. “A day after the funeral, she said, ‘Everyone’s gone: the doctors, nurses, the funeral directors. But Jenni, my counsellor from Very Special Kids, is still here’,” Michael recalls.

Counsellors like Jenni stay with families for as long as they’re needed – sometimes for years. “Families never stop grieving,” Michael says. “Over time, we can hopefully help them to cope and live with it. And when they reach the point where they say, ‘I think we’ll be okay,’ that’s when we know they’re ready to step back from our services.”

The next chapter: growing hope

Since its founding, the charity has supported thousands of families. Last year alone, the organisation delivered around 3500 counselling and emotional support sessions, 1800 bed nights at their children's hospice, 950 allied health sessions and 70 family activities.

However, the need is growing. “We currently support around 780 families,” Michael says. “We know there are at least another thousand in Victoria we haven’t yet reached.”

To meet rising demand, Very Special Kids is expanding regional access, recruiting more nurses and counsellors, and strengthening partnerships. Much of this is made possible thanks to philanthropy, including trusts managed by Equity Trustees.

“As a self-funded charity, we don’t get much government funding. So the generosity of donors, foundations and the community keeps us going.” Michael hopes that in the charity’s next chapter, philanthropy will help make care more local, more consistent and more inclusive, ensuring every Victorian family, no matter where they live, can receive support when they need it most.

“Our dream is that no family faces their child’s death or grief alone. That’s the future we want and philanthropy can make it possible.”

*Name changed for privacy reasons

“Our role is to increase the quality of and celebrate their life, as well as commiserate their death and support their family.”