News

Community backs family after Govt threatens to cut subsidy

THIRTEEN-year-old Jayden Driussi of Bexhill, born with a rare Inborn Error of Metabolism (IEM) - Tyrosinemia Type 1, relies on an federal government grant to subsidize his specialized low-protein diet.
THIRTEEN-year-old Jayden Driussi of Bexhill, born with a rare Inborn Error of Metabolism (IEM) - Tyrosinemia Type 1, relies on an federal government grant to subsidize his specialized low-protein diet. Contributed

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.

MORE 

OPINION: This funding keeps kids alive - it must not be cut

YOUR STORY: Govt to cut program that keeps Jayden alive

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."

At 13, Jayden Driussi may seem pretty young, but he is actually the second-oldest person in Australia still living with...

Posted by The Northern Star on Sunday, May 24, 2015

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."



Delays as highway village moves into town

Milestones are being reached in the progress of the Pacific Highway upgrade.

There will be highway delays on the Pacific Highway this week

Lismore and the ongoing problem of water

EARLY HOUSING: The Spencer Cottee homestead. Mrs Mary Ann Cottee (wife of Spencer Cottee) owned the old Freemasons Hotel in Lismore.

Windmill at Freemasons Hotel first 'modern convenience' of its kind

Belly dancing for a cure to cancer

Stars of Lismore  Dance For Cancer event to be held in August, profiling radiation therapist Vanessa Knibbs from Northern NSW Cancer Institute, Lismore and Sasha Fox and Danielle Sansom from The Barefoot Gypsies Belly Dance Company.

Her teacher told her she had no rhythm ... she's proving her wrong

Local Partners

School bus seatbelt blitz

"THIS is something our communities have been crying out for and I'm committed to making sure kids across the state can travel to school safely.”


Horrorshow ready to eat cake in Byron Bay

VISITING: Horrorshow is an Australian hip hop duo from Sydney formed by Adit and Solo.

Hip hop duo will play their latest music in Byron Bay this weekend

REVEALED: Meet our five Ninja Warriors

TWEED HEADS: Upcoming TV Series Ninja Warrior contestant Jaymes Wright.

Australian TV series starts next month on Channel Nine

Ballina-born rugby star to rule The Block

THE son of former local pub owners is going as a 'rookie renovator' in the upcoming series.

Schapelle Corby's Bali boyfriend 'lonely' now she's free

“I really hope we can see each other again in the future."

‘One of the most ludicrous films ever made’

Optimus Prime in Transformers: The Last Knight.

Transformers: The Last Knight has been shredded by critics.

Transformers movie bombs to horror opening week

Optimus Prime in a scene from, "Transformers: The Last Knight."

Transformers 5 had the worst opening in the franchise’s history

How 9/11 helped make Waleed Aly a household name

Waleed Aly and Susan Carland at the 2016 Logie Awards

“It feels like there was a script written for me,” he said.

Pixar weighs in on viral Toy Story theory

Woody and Buzz Lightyear from Toy Story.

DID Andy’s dad tragically die just before the story took place?

Ocean views up for sale at Bargara Rise

LAND RELEASE: Rob Sergiacomi on site at the Bargara Rise development off Watsons Road Bargara.

More ocean-view land comes on the market at Bargara

Blueberries help property market boom

RURAL MARKET: Elders sale agent Terry Deefholts, Norman Arkan and rural sales agent Angus McDonald.

Growth in the rural property market

Gateway to $3 billion, 4800 home new Coast city opens

The start of Peter Crosby Way at Sippy Downs, the northern access into the Harmony master-planned community at Palmview.

Palmview's $3b master-planned community of Harmony

Millionaire Nathan Birch to offload $55M in property

Nathan Birch wants to focus more on developing properties.

Sydney property investor has announced he is selling up

Fame factor boosts property prices in Byron

The stunning Clarke's Beach in Byron Bay.

House prices surge by an incredible 39.5% in star-studded area

Ready to SELL your property?

Post Your Ad Here!