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

    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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  • shareshare

    A mother’s journey with a silver lining

    In this story, the grief of losing her daughter fuelled Suzanne Tunks’s desire to help other families in the toughest situations of their life.

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  • shareshare

    Mum celebrates her son’s life while remembering his death

    In this inspiring story, 17-year-old Sam Hurst declined palliative chemotherapy to treat his bowel cancer, and instead made the most of his remaining months. In this story, Sam’s Lorna Hurst celebrates Sam’s short but vibrant life and shares the factors that contributed to him dying a good death.

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  • shareshare

    Frangipani, flame tree, or lemon myrtle; what tree would you like to become?

    Before Dianne Rich’s son Ashley died, he made it clear he didn’t want to be buried. “I want to be free.” It wasn’t until she discovered the Living Legacy Forest, a beautiful parkland section of the cemetery that had a lake, shrubs and boulders, rather than gravestones, that she knew what to do with Ashley’s ashes.

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  • shareshare

    Shannon’s early death inspires support for others without access to after-hours specialist palliative care

    After a long fight with leukaemia, 19-year-old Shannon’s only wish was to spend her last days at home in her own bed, in rural Victoria. In this story, Shannon’s father Jeremy shared how his initial fear in caring for – due to limited after-hour specialist palliative care support – was calmed after receiving extraordinary support from a doctor, in the form…

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