YOUR STORY: Govt to cut program that keeps Jayden alive
MY son Jayden Driussi, now 13, was just 9 months old and in liver failure when he was diagnosed with a rare Inborn Error of Metabolism (IEM) - Tyrosinemia Type 1 or HT1.
Jayden and other children with Tyrosinemia cannot break down the amino acid Tyrosine.
He is treated with a very restricted low protein diet using special medically modified foods, a prescribed medical dietary supplement that is designed to replace protein and nutrients most people get from food, as well as prescribed medication.
Without proper management, tyrosine and its by-products build up in tissues and organs, causing serious health problems such as liver cancer.
If Jayden had not been diagnosed and his condition not managed, he would not be here alive with us today, through proper management he is a happy, healthy 13-year-old who enjoys sports and hanging out with his friends.
Tyrosinemia is a lifelong disorder and for sufferers there is no margin for error with their diet.
The restriction on Jayden is profound.
Imagine a day where you cannot eat meat, fish, any dairy products, nuts, seeds, legumes and most other processed packaged foods including bread, pasta, cereal and flour.
This is Jayden's diet every day, the only way we can fill him up is with specially made low protein products.
These special medical foods are extremely expensive to buy.
For example a loaf of low protein bread costs $10 and only has 10 small slices, Jayden being a teenage boy easily eats 2 sandwiches for lunch (that's nearly half of the loaf of bread).
A 375g box of cereal is $14.95 (this usually only last 2-3 breakfasts), a 500g box of pasta is $10. The food is approximately 7 times more expensive than regular food.
Since 2001 the Federal Government had assisted families with a monthly food grant (IEM Grant) to help cover the cost of sustaining the complex and expensive diet that includes specialised low protein foods.
Jayden is the second eldest person alive in Australia living with his condition, before this time the proper management of his condition was not available and resulted in premature death. Jayden is living testament of the importance of dietary management of this condition.
But now we have been told that this essential food grant will no longer be available after the Federal Government announced they would cease funding the program by the end of the year.
I am quite shocked by the government's decision, as we don't get much other assistance from the Federal Government.
We travel interstate with Jayden to see specialists for management of his condition but his much needed medication is funded by the State Government, which means I then have to make extra appointments with a local paediatrician to get a prescription to ensure the correct state is paying for his medication.
All of these extra appointments add up to extra costs for us.
The impact on losing this food grant is huge, on us and other people living with these disorders, because without these medical foods children simply won't develop properly or in some cases even survive.
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An excerpt from the budget papers reads 'low protein foods are now much more readily available and at lower cost'.
This simply is not true, there are only three suppliers of low protein foods in Australia, all of which only have a very limited range of products.
In my 12 years of purchasing these products for my son, they have not gotten any cheaper, in fact, if we factor in the costs of shipping, then the prices for us and other people like us who live in a rural area, have increased significantly.
It costs us $50 just in shipping costs to get 1 bag of cheese and 1 packet of cheese slices delivered from the supplier in Melbourne.
The management of this condition is a miracle of modern medicine and any move to cut funding would be incredibly short-sighted when you weigh up the long-term costs to the government if this condition is not managed correctly.
Without this funding, we will not be able to effectively manage and prevent the side effects of Jayden's disorder. Taking away this funding is going to take away my sons quality of life.
I am confident that if the government realises the severity of these low protein diets and the role the IEM grant plays in keeping kids like Jayden healthy, they will not hesitate in saving the program.
I am appealing to the Government to urgently reconsider this decision.