WHEN Lincoln Elwell was put on life support at nine-days-old it shattered his family, but that didn't mean the world around them stopped.
Lincoln was diagnosed with enterovirus myocarditis last December and the Elwell family spent 135 days at the Lady Cilento Children's Hospital while he fought for his life.
Lincoln's desperate five-month struggle for life ended in April and now his parents Zoe and Mick Elwell are fighting for families in similar situations.
Having a sick child in hospital is hard enough without having to worry about the extra stress of bills and direct debits.
Mrs Elwell has started a Charge.org petition to campaign for more government help for families who have children in paediatric ICU.
Should parents with sick children get more help?
This poll ended on 13 August 2016.
This is not a scientific poll. The results reflect only the opinions of those who chose to participate.
When Lincoln first went to ICU Mrs Elwell travelled to Brisbane with just the clothes on her back.
She said it was clear that if he was going to survive he would be in the paediatric ICU long term.
"The doctors informed us this would be a marathon, not a sprint," she said.
The Elwells were lucky enough to secure one of the nine rooms at Ronald McDonald House.
"Other families are not so lucky. There are only nine rooms available and most of the time they are full," she said.
"These rooms also only allow parents, so if there are other children, families who are in these dire circumstances are forced to pay for accommodation which is about $150 a night."
She acknowledges that there are payments for families in her situation but they take months to be approved.
Ms Elwell is campaigning for an emergency payment for parents who suddenly find themselves in ICU with a critically ill child.
At the moment parents can receive a travel subsidy of $60 a night if they live more than 50km away from the hospital but this takes time to apply for and to be approved.
There are payments available from Centrelink but they can take up to eight weeks to process.
"Let me assure you, there is not one family we met that had the inclination or the time to apply for these payments," she said.
"They would rather have no money, then leave their child who is in a very critical situation.
"There is a big possibility that their child may not survive."
In her petition Mrs Elwell addresses the Department of Human Services.
She said she would like a payment be made available within two days for patients who are predicted to be in ICU for longer than seven days.
"This little bit of financial help would lessen the stress immensely," she said.
"We met families where the parents were unable to stay with their very sick child as they had to go back to work because they couldn't afford to stay there.
"This was the absolute saddest situation to see; watching a parent have no other choice is truly heartbreaking."
Mrs Elwell's petition has already received almost 4000 signatures and she needs 5000 to take the petition to incoming Member for Groom John McVeigh and Human Services Minister Alan Tudge.
If you would like to support the petition click here.
Update your news preferences and get the latest news delivered to your inbox.