Three-year-old Zakariah looks like any other kid.
But a lamb chop could send him into a coma.
As one of an estimated 1400 Australian sufferers of an Inborn Error of Metabolism, Zak cannot digest protein.
His family relies on a $256 a month subsidy from the Federal Government to purchase expensive low-protein foods from a German supplier.
Where a bag of low-protein cheese costs $27.50, a packet of low-protein spaghetti costs $15, and a kilo of low-protein flour costs $15, the grocery bills for feeding Zak add up each month.
But the family were shocked to receive a letter last week saying their subsidy had been axed as part of Federal Government Budget efficiencies.
A one sentence line-item in the Budget confirms "ceasing the Inborn Error of Metabolism programme, as key medicines are now listed on the Pharmaceutical Benefits Scheme and low protein foods are now much more readily available at lower cost".
The Metabolic Dietary Disorders Association says 904 sufferers access the grant, which means the cut, which is effective from the end of this year, will save between $15 and $17 million over five years.
For Zak's mum Jasmine Matthew and grandmother Helga Rosenthal, it is a sneaky and cruel way to address the deficit.
The pair work together closely to care for a child who could suffer brain damage depending on what he puts into his mouth.
They received a letter from the Department of Health last week informing them that the scheme – which has been in place since 2001 – was no longer necessary as government subsidies now existed on a range of amino acid formulas and supplements.
But there is no Australian producer of the low-protein foods that make up Zak's diet and they will continue having to make orders overseas - on top of buying his amino acid formula.
For Mrs Matthew, the support of her parents in helping care for Zak has been invaluable.
"Without them, I couldn't do it," she said.
Mrs Rosenthal works part-time around helping her daughter care for Zak, who had five serious hospital admissions last year.
According to Mrs Rosenthal, the family would rally to ensure Zak got all the safe food he needed, but other families may find the budget cut more difficult to cover.
Sufferers of an Inborn Error of Metabolism cannot break down specific amino acids in protein causing a dangerous build-up of toxins in their blood, liver or brain tissue depending on the specific disorder.
Zak has Maple Syrup Urine Disease - which could kill him if left untreated.
The disorders are incurable and usually picked up in newborn screening heel prick tests where an immediate and lifelong treatment plan must start.
Zak and sufferers like him cannot eat meat, dairy, legumes or eggs. Fruits and vegetables such as bananas and avocados also contain protein so can only be eaten in small, measured quantities.
Mrs Matthew said the family did the best they could ensuring Zak lived a happy and relatively normal life - buying low-protein cake mixes for birthdays.
Mrs Rosenthal said she was furious at the Federal Government's lack of consultation or publicity over the cut.
"I think this is a heartless cut, to a group of children who look fairly much like other children but whose lives are severely affected by this disorder and I worry about other families coping with what we cope with," Mrs Rosenthal said.
Mrs Matthew said she felt lucky in a sense. "I worry about families who don't have the support I have with my parents helping care for him. When your child has a metabolic disorder, you can't just leave them in childcare, they need constant supervision and care, so I think a lot of affected families may be on single or low incomes."
The Metabolic Dietary Disorders Association said the $256.75 per month provided by the Commonwealth "only covers a fraction of the overall food costs, but is extremely valuable to affected families and goes some way to assist. It would be devastating to families if they were to lose this essential funding," according to president Monique Cooper.
She has sought an urgent meeting with the Health department this week.
