Appeal for family living "worst nightmare"
A Burpengary East family is living its "worst nightmare" with no-one able to say what the future holds for their oldest son.
Parents Helen and Tim Stieler have been at the beside of Jaxson, in the Queensland Children’s Hospital, 24/7 for the last six months.
The nine-year-old is unconscious, cannot open his eyes and only moves his right arm occasionally.
Helen and Tim have not left Jaxson for around 180 days doing everything they can for him, while also looking after younger brother Phillip.
It is a deeply emotional, exhausting time and financial stress is building. Tim, a fly-in-fly-out worker, has not been able to return to his job in West Australia.
Now a GoFundMe page, set up by close friend Jacqui Villafrade, aims to raise $30,000, with a priority being a new car which can be adapted to suit Jaxson’s needs.
The funds would also help pay for modifications needed at the Stieler family home when Jaxson leaves hospital. So far, almost $17,500 has been donated.
Seven months ago, Jaxson was “fit and healthy” having finished term three at school. He played football, loved riding his scooter and bike, playing with Phillip and their dog.
But Helen and Tim noticed their son was “a bit tired” and in swimming lessons was having trouble getting his left arm out the water.
A GP recommended going to Queensland Children’s Hospital where an MRI scan showed a mass in the mid centre of Jaxson’s brain.
Part of the tumour was removed on October 4, but surgeons were “challenged” by a bleed from a blood vessel in the tumour.
Two hours after leaving theatre, Jaxson was back in. A haematoma was found in his cavity and needed a craniotomy to control the bleeding. From that day Jaxson has been unconscious.
In a post on Jaxson’s Journey Facebook page last month, parents Helen and Tim spoke of the “ups and downs, plenty of tears, frustration and endless exhaustion!"
“We are still moving forward and continue to take those tiny steps towards our goal for Jaxson to make a full recovery.
“Intensive therapy continues while we are still in the hospital."
Broncos players have visited and with help from Ronald McDonald House, Jaxson went to last week’s Broncos v Cowboys game.
A sign on Jaxson’s room door also tells visitors he can “hear and understand things you say”.
“We have to take full advantage of it (therapy) because once we leave, that intensity will be scaled back to what NDIS think is reasonable for someone in Jaxson’s condition," Helen and Tim said.
“We have mixed emotions about bringing Jaxson home. He is not the same child we left with to go to the hospital and home life looks very different now.
“The hospital has always been our safe space. The emergency button available for the ‘just in case’ moment and nurses are constantly checking on him every few hours.
“That responsibility will now rest in our hands. The excitement of not living at the hospital and being together as a family again is dulled with the feeling of anxiety.”
“Our car will no longer be suitable to transport Jaxson and (we) will need to alter a new one to suit his needs,” Helen and Tim wrote.
“We will need to find the money for a new car and with this comes the realisation that Tim will need to go back to work sooner for this to occur.
“What his work will look like is yet to be determined, as ‘fifo’ back to Western Australia isn’t really an option now.”
To donate via the GoFundMe page click here