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 Dr Laura Chapman

    In this story we hear from Dr Chapman about her experience with Paediatric Palliative Care. "I feel very privileged to have some limited experience in the field of paediatric palliative care but would not claim to be an expert by any means. My role as a GP within this highly specialised area is to be the consistent point of contact for…

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  • shareshare

    Because of Cosette, I will be forever changed

    In this story Jodie, mother of Cosette generously shares her memories of the palliative care journey, the precious times, the treasured bracelet and Cosette's farewell.

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  • shareshare

    A Special Role in Paediatric Palliative Care – our dedicated volunteers

    Paediatric Palliative Care Family Support volunteers provide emotional and practical support to patients and their families.  

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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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