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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