Pioneer of paediatric palliative care, Sister Margaret Noone AM, dies aged 91

The driving force behind the opening of Australia’s first children’s hospice and pioneer of paediatric palliative care, Sister Margaret Noone AM, died surrounded by loved ones.

Sister Margaret Noone has died aged 91.

The driving force behind the opening of Australia’s first children’s hospice and pioneer of paediatric palliative care, Sister Margaret Noone AM, has died at the age of 91.

Very Special Kids (VSK), the organisation Sister Margaret joined at its launch in 1985, announced her death on Friday, saying she was surrounded by loved ones when she passed.

Sister Margaret was a member of The Institute of the Blessed Virgin Mary, better known as a Loreto Sister, for decades before joining VSK.

She quickly set her sights on the need for “holistic paediatric palliative care outside of acute hospital care” upon joining the organisation - a dream she made a reality in 1996 with the opening of the first Very Special Kids House.

Sister Margaret Noone (centre) with horse racing identity and trainer Gai Waterhouse with children at the Very Special Kids Children's Hospice in Melbourne. Picture: AAP Image

CEO of Michael Wasley VSK said Sister Margaret was the “heart and soul” of VSK and it was now their job to keep working in her honour.

“It’s a sad day for us, but it’s also a chance to reflect on Sister Margaret’s lasting impact, not only on the families in our care but also on our wider community, the healthcare sector and the government,” he said.

“Without her determination and advocacy, paediatric palliative care in Australia would not have reached the level of progress it has today. Now, it is up to us to keep that legacy alive.”

Community Leader Sister Mercia Richards said she was an inspiration to all

“Margaret joined the Loreto Sisters as a 20-year-old,” she said.

Sister Margaret Noone was surrounded by loved ones when she passed. Picture: Ellen Smith

“She lived to fulfil the words of Mary Ward, the foundress of the IBVM ‘that women in time to come will do much’.

“Margaret’s creative and passionate concern for others was a driving force behind Very Special Kids. Her witness to the dignity and wellbeing of children and young people is an inspiration to our suffering world today.”

Sister Margaret was also a member of the first committee for the Palliative Care Association of Australia, and the International Work Group on Death, Dying and Bereavement.

In 2000 she received a Member of the Order of Australia award for her work.

In 2023 the only children’s hospice in Victoria was named in her honour, the Sister Margaret Noone Hospice at Very Special Kids House.

A public funeral is set to be announced in the coming days.

Originally published as Pioneer of paediatric palliative care, Sister Margaret Noone AM, dies aged 91