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Our history

Since 1985, Very Special Kids has stood alongside thousands of Victorian families – providing guidance and support as they face their complex journey with childhood life-limiting illness.

This is our story.

A very special beginning

In the early ’80s, two families met while caring for their children who were dying from leukemia. Relying on one another for support, they realised no organisation existed for families like theirs. They decided this needed to change. Over the following years, more parents of seriously ill children banded together and by 1985, Very Special Kids was formed and its first employee hired. Enter Sister Margaret Noone.

Sister Margaret is a Loreto Sister, a former teacher and junior school principal. During her time overseas, Margaret volunteered and worked with children affected by life-threatening conditions, spurring her passion to continue this work in Australia.

Sister Margaret shared “The beginning was difficult because although I saw there was a need, and the families saw there was a need, we had to convince other people that there was a need for our services.

It was during these pivotal early years that Sister Margaret proved herself as a trailblazer in paediatric palliative care, creating the space and attention in the healthcare sector that children and young people with life-limiting conditions, and their families, deserve.

 

Opening Australia’s first children’s hospice

“After visiting children’s hospices in the UK, my dream was to build the first children’s hospice in Australia. The building as such, is only bricks and mortar but Very Special Kids House is more, much more. It is a home in the true sense of the word”

Margaret’s dream turned to reality in 1996, when we opened the doors to Very Special Kids House, Australia’s first children’s hospice.

Offering both respite and end-of-life care, this home away from home gave parents and children with life-limiting conditions something they had never had before: a medically equipped and fun space to call their own.

A holistic approach to care

With the bricks and mortar care established, we looked to other ways we could provide greater assistance to the whole family.

Understanding that each family member will have their own set of needs, we set to work refining our holistic approach to care. From establishing our sibling support program (1997) and bringing the joy of music therapy to children (2001), to providing purpose-built holiday accommodation for families (2012) and introducing art therapy (2014) and physiotherapy (2018) in our hospice, our range of services are as varied as the children and families we serve.

After 17 years of driving change, Sister Margaret retired as Director of Very Special Kids in 2002, making way for the next generation of changemakers. To this day, she remains heavily involved in the organisation’s vision and direction and holds the title of Patron.

The future of paediatric palliative care

After 25 years of caring for thousands of seriously ill children and young people, our hospice was decommissioned in 2021 to make way for our new world-class facility.

The aptly named Sister Margaret Noone Hospice at Very Special Kids House officially opened in 2023. Like its namesake, the hospice will revolutionise the way we provide paediatric palliative care now and into the future.