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."



This weekend's Northern Rivers markets list

ICONIC: The Lismore Carboot Markets have been operating every second weekend for decades.

Where to get fantastic local produce and fresh coffee from

Lismore's central park misses out on funding

LISMORE PARK: Plans for the $21.5 million plan for Lismore's own 'central park'.

The council is looking at new ways of attracting funding

Focus on bush foods as demand grows

Demand for bush foods continues to increase.

Bush foods will be the centre of attention in a two-day workshop

Local Partners

A week of threats, fatalities, approvals and Australia Day

IT HAS been a very newsworthy week for the Northern Rivers.


Ten fantastic things to do this week

FOOD GLORIOUS FOOD: Pictured getting set for this Saturday's inaugural Ballina Street Food Festival are (from left) Kat Creasey from The Design Collective, general manager of the Cherry Street Sports Club Tere Sheehan, the club's operations manager Brad Benson, club executive chef Jim Coakley and Matt Whalley from The Design Collective.

From food trucks to vikings and from Rapunzel to Frank N Further

Goodbye Cunny, hello Josh

YOUNG: Australian comedian and Youtube star Josh Wade.

Wade is getting rid of the character that made him an online star

Bangalow faces the music this weekend

WORLD-FAMOUS: Didgeridoo player and winner of the 2012 ARIA for best classical album Kulkadunga, William Barton, is part of the line up at the Bangalow Music Festival 2017.

Bangalow Music Festival will offer a number of music events

Taylor Swift wipes presence off social media

TAYLOR Swift has completely disappeared off social media — and her fans don’t know what to think.

Swedish TV drama turns up heat

Louise Nyvall stars in the Swedish TV series Farang.

Scandinavian crime thriller goes troppo

Aboriginal artists' call to action

Anwar Young, winner of this year's overall prize and last year's young artist prize.

Important messages of survival and healing

Radio host Matt Okine leaps to small screen

Valene Kane, Matt Okine and Harriet Dyer star in the TV series The Other Guy.

First foray into acting a long time in the making

Hollywood’s new highest paid actress

Jennifer Lawrence had to settle for third this year behind Emma Stone and Jennifer Aniston.

CAN you guess who has dethroned Jennifer Lawrence?

Movie trailer dubbed too racy for TV

Alicia Vikander stars in Tulip Fever.

THE trailer for Tulip Fever is so saucy some networks have banned it

Liz Hurley, 52, has never looked better

She’s definitely not shy to pose in a bikini.

Life in your 50s has never looked as good as it does on Liz Hurley.

199 home sites approved in Evans Head

The Evans Head Manufactured Home Estate plans. Zoran Architecture.

Manufactured Home estate approved near aerodrome

Airbnb, Stayz and co tipped to squeeze Coast housing market

HOLIDAY BOOM: Airbnb letting is putting a further squeeze on long-term rentals.

Councils exploring options to manage the industry

Developer tears up couple's contract for new home

Jade and Edward Roberts were stung by the sunset clause on the first day of their honeymoon.

The developer has the right to do this under the sunset clause

Reports of Ibrahim family connections to farm and food hub

John Ibrahimat Bluesfest 2012.

REPORTS circulate colourful Sydney family have investments on the NR