RICHMOND MP Justine Elliot has thrown her support behind a fight for funding needed to help a Bexhill teen and other children with his rare condition alive.
Jayden Driussi, 13, has a rare dietary condition called Inborn Error of Metabolism (IEM) - Tyrosinemia Type 1, which severely limits the range of foods his body can handle.
He was diagnosed with the illness when he began suffering liver failure at only 9-months of age.
Children with the condition typically die young, but a Federal Government subsidy introduced in 2001 allows Jayden and the hundreds of others with his condition to access expensive, highly specialised foods their bodies can handle.
As a result of that subsidy, introduced not long before he was born, Jayden is now the second-oldest person in Australia with tyrosinemia.
So it was with shock that Jayden's mother, Shanna Driussi, read this week that the Federal Government planned to scrap the IEM food grants subsidy, which is worth $257 a month to their family.
"There was no warning or consultation. We were told that the grant will run out by the end of the year," Mrs Driussi said.
The family are backing a campaign by the Metabolic Dietary Disorders Association to reinstate the grant.
The association requested an urgent meeting with the Federal Government's Department of Health for early this week and understand they are keen to participate.
Metabolic Dietary Disorders Association president Monique Cooper said the group was optimistic the decision would be reversed.
"We are hopeful the Department will, once they understand the facts and implications have the decision reversed so hundreds of families can have a better chance of a normal life," Mrs Cooper said.
With only 902 Australians with the disorder, Jayden is the second-eldest person living with his condition in the country. According to specialists, he is living testament of the importance of dietary management of this condition.
Mrs Driussi said, without the grant, her average-earning working family would have to forgo family outings and non-essentials to make ends meet.
"Jayden's dream is to get his apprenticeship. At 16 he will lose his healthcare card and without the IEM grant we fear he may not be able to support himself as an apprentice tradesman," she said.
"A loaf of low protein bread costs $10 and only has 10 small slices. Jayden being a teenage boy easily eats two sandwiches for lunch nearly half of the loaf of bread).
"A 375g box of cereal is $14.95 - this usually only lasts two to three breakfasts. A 500g box of pasta is $10.
Richmond MP Justine Elliot said she would argue for the family in parliament.
"The slashing of the IEM grant is a pathetic and cruel funding cut from a nasty and cruel government," she said.
"I will continue to highlight this unfair measure."
The family also won support from followers of The Northern Star's Facebook page, with comments reflecting readers' shock and anger at the decision.
"Makes me sick to think our government could even consider doing this to its people," Suzanne Ramaker said.
"It's all about their (the government's) pockets," said Mary Ward. "Would love to see them live on what others have to."
Update your news preferences and get the latest news delivered to your inbox.