Campaign saves food grant that keeps kids like Jayden alive
A CONCERTED effort between local media, politicians and one dedicated mum has led to the reinstatement of a grant that subsidises access to specialised low-protein food. The subsidy helps keep young people like Jayden Driussi alive.
Like the other 902 Australians who suffer from the rare condition Inborn Error of Metabolism (IEM), Bexhill teen Jayden and his family were in disbelief when in May the Federal Government announced its plan to scrap the IEM food grant subsidy, which is worth $257 a month for sufferers.
However, prompted by The Northern Star's story about Jayden's struggle, Page MP Kevin Hogan met with Health Minister Sussan Ley in early June and raised the issue of IEM grants.
"I asked the minister to reconsider proposed changes as it would cause hardship for families affected by this condition. She agreed (on Saturday)," he said.
The Star's story was prompted by a Your Story submission on this website by Jayden's mum, Shanna.
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.
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.
The IEM grant was due to finish on December 31 this year.
Jayden' mum Shanna Driussi, who strongly championed the food grant reinstatement - for her son and other young sufferers - said she was relieved to hear the news on the weekend.
"We wanted a future that was secure for our son to be able to access these foods. We have that again," she said.
Ms Driussi said the campaign to reinstate the necessary grant was an 'eye-opener into how the government works'.
"All in all it has been a positive journey. I always believed that if the right information was given to the right people there would be a good outcome," she said.
"Kevin Hogan and Health minister Sussan Ley have listened, and they have seen the need that families like ours have for this grant."
Ms Driussi said there should have been consultation with groups like the Metabolic Dietary Disorder Association before the budget cut was made. "Possibly the grant wouldn't have been cancelled in the first place."
"Hopefully it will help change the way the consultation process works."
For Jayden, it means greater choice for his future. His plan to support himself through an apprenticeship when older is again possible.
"He is doing very well. He is very accepting of his Tyrosinemia (a type of IEM)," Ms Driussi said.