In this story we share some important information that may be helpful as you navigate Paediatric Palliative care. Carer Gateway provides support to carers during difficult times.
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In this story we hear from Jess, mother of Henry who shares her experience with Paediatric Palliative Care and the support they provided along the journey including making the challenging decision of end of life location.
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“The Action Plan is a roadmap for a national approach that provides guidance and direction on key priorities to improve outcomes for infants, children and young people living with a life-limiting condition.
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In this story we hear from Heidi, a Social Worker in Paediatric Palliative Care. She shares her reflection on this important role and the individuals and families that inspire her.
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In this story we meet Tanya, an Aboriginal Health Worker working in Paediatric Palliative Care. Tanya shares with us what motivated her to take on this role and the important work she does.
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In this story we hear from Alison who shares with us the difficult decision to move from direct clinical care working with children and families to a research pathway to make changes to care at a system level,
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In this story we hear from Bec, a Registered Nurse reflecting on the important and rewarding role of Nurse's caring for children and supporting families throughout the paediatric palliative care journey.
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In this story Preeti, mother of Ziya shares her memories of her daughter and reflects on the importance of making memories.
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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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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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Paediatric Palliative Care Family Support volunteers provide emotional and practical support to patients and their families.
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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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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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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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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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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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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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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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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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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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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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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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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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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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