Children’s Palliative Care – Charlie’s Story

“The death of a child is considered the worst loss you can go through and I think that’s particularly true of the families I’ve worked with ” Natasha Samy, Social Worker & Bereavement Counsellor.

This short film tells the story of Charlie and his family from Sydney, Australia.

“Charlie has GM1 gangliosidosis and that is a storage disorder that effects nerves results in Charlie being physically impaired and also cognitively impaired,” Dr John Collins.

CHARLIE’S STORY

Regrettably, not all conditions can be cured. However, many children with life-limiting conditions will live for years, if not decades. Currently, 20 Million children around the world can benefit from palliative care, but access to services remains an issue (ICPCN). Children are particularly at risk of inadequate pain management due to age related factors, limited access to essential medicines and misconceptions about how to effectively treat their pain.  These vulnerable children and families are suffering. They are largely invisible. But for those who are receiving care, the results are extraordinary.

These remarkable stories show young people finding hope, love, joy and attainment in the face of the inevitable.

Featuring
–  Charlie
–  Ali
–  Liz Sciberras
–  Dave Sciberras
–  Dr John Collins
–  Natasha Samy.

www.chw.edu.au

 

OTHER SHORTFILMS

Little Stars – UK Hospice Going Global

This week we are pleased to be supporting the release of a short film that encourages sharing skills and knowledge of children’s palliative care internationally. This film explains what we can learn together by international linking and...

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Matteo’s Story – Care Beyond Cure

Care Beyond Cure – Ondine's Syndrome “One of the things I remember when we first met Matteo was the phrase ‘we are giving you a baby who is alive’ that phrase meant everything and nothing, it meant that Matteo could die at anytime. Children...

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Marmaduke’s Story – Childhood Cancer

“When you realize how uncertain life is , you do begin to appreciate the value or family and friendships and enjoy those moments while you have them because you don’t know what’s around the corner,” Simon Waring. Marmaduke’s Story highlights...

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Kali’s Story – Beyond The NICU

"The term palliative care often is perceived by some of my colleagues and some parents as giving up hope or working with the death-and-dying squad.  What they may not understand is that clearly using palliative care means that kids actually...

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Value Every Life

“Paediatric palliative care in its essence is a response to the suffering of a child and a family who are facing life-threatening or life-limiting conditions  It’s holistic, looking at the body, mind and spirit within the social and cultural...

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