The Courier – 13 October 2015
Joseph’s palliative care journey | video
– Olivia Shying
ON JOSEPH Stewart’s sixth birthday his parents were faced with a devastating reality – their vibrant, happy child might not make it through the day. The tenacious seven-year-old was a healthy baby, until he was diagnosed with severe epilepsy at just three months of age.
The feisty youngster experienced up to 1000 seizures a day and consequently has severe disabilities. He lives with a life-threatening illness and is enrolled in palliative care at the Royal Children’s Hospital. His mum, Fiona Stewart, said Joseph’s initial diagnosis was gut-wrenching for the her, Joseph’s dad Chris and sister Greta, now 10.
Palliative care for children is rarely spoken about and dying children often become hidden patients. To make people aware of the significant impact palliative care treatments have on terminally-ill children like Joseph, the Stewarts have released a video in conjunction with Palliative Care Australia.
“At first (Joseph’s future) was very uncertain because his diagnosis was unclear and some children who have a lot of seizures go on to develop normally and have happy, healthy lives,” Mrs Stewart said.
This wasn’t Joseph’s reality. The Ballarat Specialist School pupil is non verbal, confined to a wheelchair and can only stand with the aid of a machine. But that does not stop him from being vibrant and happy.
For how long Joseph will remain this way, the Stewarts do not know. At any given moment Joseph could have a severe seizure and die.
“If you have a bad cancer diagnosis you have some idea of how much time you have,” Mrs Stewart said.
“We are living with the fact that Joseph has a live threatening illness – but we have no idea of how long he has.”
Last year was particularly bad for Joseph – he spent months in hospital and there were times when his family thought he would not live through.
“We did have to make steps into discussing end of life care decisions,” Mrs Stewart said.
Having a team of people supporting them throughout Joseph’s treatment made these heart-breaking discussions bearable.
“We know Joe will deteriorate and we know someone will be there for us,” Mrs Stewart said.
The palliative care program offers respite, sibling support and family support.
Read the story online here: http://www.thecourier.com.au/story/3418766/joseph-is-a-little-star/
It has been proven that palliative care services result in better outcomes for patients, their families and friends. But the conversation quickly halts when it comes to talking about the services available to children with life-limiting...
Moonshine Movies' Little Stars is a film that comes with a warning - it'll probably change your life. Little Stars tells the story of a handful of seriously ill young people putting their limitations to one side to achieve the best they can...
Why being a did is so special to me - Catherine Lambert A day rarely passes when Simon Waring did not kiss his son's soft, bright cheeks. Three years ago he kissed them for the last time. "I bent down to kiss his check and and suddenly his...
Bloem girl's HIV story set for big screen - Mamello Mokoena, Bloemfontein Moonshine Movies, an Australian Film company responsible for the award-winning 2012 series of short and feature-length films about pain control and pallioative care,...
Little Stars burn bright - Rob Gill The World Cancer Congress in Melbourne last night (Friday 5 December) celebrated the official Australian launch of Little Stars, the locally-produced series of films at the heart of a global advocacy...
Saving Little Stars in Greece - Nelly Skoufatoglou The Australian film project campaigns to help Merimna's Children's Home Care Service in Greece Little Stars is a campaign set to inform and promote the value of paediatric palliative care...
Little Stars - Talha Khan Burki Lancet Oncology, The, 2015-05-01, Volume 16, Issue 5, Pages 495-495, Copyright © 2015 Elsevier Ltd “Currently the prevailing view of ‘hospice’ as it relates to children is negative”, explains the production...