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.
- View Joseph’s video online at thecourier.com.au