Little Stars to raise awareness of paediatric palliative care
A new DVD capturing life-affirming stories about paediatric palliative care is available free to people wishing to raise awareness.
The movie, “Little Stars – accomplishing the extraordinary in the face of serious illness”, was screened for the first time in Australia today at the 13th Australian Palliative Care Conference in Melbourne.
Filmmakers Mike Hill and Sue Collins have travelled to 11 countries to film paediatric palliative care stories, showing young people finding hope, love, joy and attainment in the face of the inevitable.
Speaking in a panel discussion after the screening, Mr Hill said when filming “Little Stars”, they were looking for “extraordinary stories where the service allowed people to do things they wouldn’t have otherwise been able to do”.
Ms Collins said the DVD was available free at www.littlestars.tv for people wanting to use it to “get conversations going” within workplaces, clinical settings or among friends and family. She suggested screenings could be used to raise awareness on World Hospice and Palliative Care Day on 10 October 2015.
She said in the early stages of making the film, there was concern about whether families would want to be part of the project, “so it was interesting how much people did want to share and have their stories told.”
Little Stars features Melbourne father Simon Waring, whose son Marmaduke died of childhood cancer. Mr Waring’s wife Millsom also died of cancer, shortly before Marmaduke.
Speaking at today’s launch, Mr Waring said being interviewed for the film represented the first time he had sat down and told his family’s story at length.
“I thought if the educational film helps one family access the sort of support we had it would be worth talking about it,” he said.
“Those last few weeks with Marmaduke were particularly important. There is a wonderful joy there and an acceptance. People find it very challenging to discuss that. I think this sort of project can make a massive difference by drawing some of the fear away from the subject.”
Mr Waring said despite his illness, Marmaduke was never defined by cancer.
“If you look at any of those children in the film with illnesses, they are just looking to enjoy each day.”
Simone Kiefel, a nurse on the conference panel who treated Marmaduke at the Royal Children’s Hospital, agreed.
“As I reflect, I think of Marmaduke and our role is not to forget the person having the experience. He was a little person who had a deep love of many things. The first his family, and second and close behind was dinosaurs and baby chinos.”
“We work really hard at debunking myths; that paediatric palliative care isn’t really awful all of the time.”
Mr Waring said by enabling people to hear people’s stories it challenged people’s perceptions of paediatric palliative care.
“One of the greatest things you can do is begin the conversations and reduce the fear. Whether it’s trying to influence administrators in terms of funding, or raise donations, if people reduce the fear and show the joy that is a great starting point.”
The film features Mr Waring explaining that in grief, he found gratitude an easier path than loss.
“With gratitude I am grateful for what I had, so I celebrate their lives and their memories.
“It values them in a sense – I can think of them and think of the wonderful times we had together, the times we shared.
“So yes, it was a short journey but it was so rich. And there is plenty to celebrate and I thrive on it now.”
Readers who see the film are encouraged to rate it online at imbd.com
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