Paediatric Palliative Care Stories

We are grateful to the families who have generously shared their paediatric palliative care stories. These stories cover a diverse range of life-limiting conditions and stages of the palliative care journey. Reading these stories may be upsetting, however, we trust they will also help to raise community awareness of paediatric palliative care and assist families who may be having similar experiences understand that there are others who may also be experiencing the same journey.
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  • shareshare

    Meet Angela - Music therapist

    As a music therapist, I am privileged to work with children and young people with life-limiting conditions and their families to explore music-facilitated experiences in meaningful ways where often we can't find the words.

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  • shareshare

    Yellow for Evie

    Her rare diagnosis meant that we lived each day in the moment, fully present but also living in between worlds. One foot aware and prepared in the potential of loss, and one in the world of life and the here and now.

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  • shareshare

    Emma

    We knew everything there was to know, we were all ready – until we weren’t…Emma was born at 38 weeks, a fabulous 3kgs, 10 fingers, 10 toes – but not breathing. She was blue, limp and needed resuscitating. Due to the incredible skill and a whole lot of luck, the neonatal team were able to get her heart started and she…

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  • shareshare

    Rio's Story and Rio's Legacy

    As I stood in the emergency department for the third time in a week holding my usually alert 16-month-old who had gastro, I pleaded with staff to consider that he might be really unwell.

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  • shareshare

    As a sibling....

    In this story, the author shares his reaction to the moment he was told - as a teenager - that his sister Dainere only had a year left to live. We hear his first-hand experience of what it was like to help care for his dying sister at home, and the invaluable support Dainere and her family received from the palliative care…

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  • shareshare

    The rollercoaster journey..

    In this story Nalani shares the feelings, questions and challenges she faced while supporting her sister through Cancer treatment and palliative care. She reminds us to make the most of the time they have left. Do something together, create special memories to cherish forever.

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  • shareshare

    Marc’s Story - His journey with Lissencephaly

    In this story, the Morley family share about the death of their six-year-old son Marc - who lost a battle with Lissencephaly, a rare genetic brain malformation. It wasn’t until the family engaged with palliative care, after avoiding it for so long, that they said: “We renamed palliative care to quality-of-life care, because for us, it was about living, not dying.”

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  • shareshare

    Bear Cottage was our lifeline

    Being the parent of a child with a life-limiting illness isn’t easy. But for Fiona, mother of nine-year-old Abi and 11-year-old Max, who lives with Batten Disease, “Bear Cottage is the only place we feel normal”. Despite their initial apprehensive about going, Bear Cottage far surpassed Fiona’s expectations: “It had everything we needed and more.”

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  • shareshare

    Maddie is part of our family

    In this story, we learn how the quality time Maddie – a Very Special Kids volunteer – spent with Marco, who has a rare genetic condition, and his younger brother Lucas, improved life for the whole family.

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