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.




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.




Guest Blog by Dr John Collins


Throughout the world, the preferred location of care for children receiving palliative care is  home for the majority of the time. At times hospital and hospice care are needed, but most families desire to be at home with their children, or close to home, for as long as possible. Home is where families feel most empowered to be themselves in their ordinary routines, with a minimum of rules and regulations. Home better supports the needs of siblings in their ordinary routines to attend school, for example. Home also better supports the needs of an extended family to visit and offer support. Read more…

Children’s Hospital at Westmead



The Children’s Hospital at Westmead, the largest paediatric centre in NSW, is world-renowned for its high quality, specialised treatment of sick children.


Part of the Sydney Children’s Hospitals Network, it provides specialist care for children from around Australia and across the Pacific Rim as well as community education, advocacy for improved child health and ground-breaking research into childhood illnesses, all in a positive, caring and healing environment.

Read more…

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