By GEORGIA WESTGARTH
IF three-year-old Harrison Scott and five-year-old Reef Emerson eat more than five grams of protein a day, they will develop brain damage, liver failure, experience seizures and die prematurely.
Killing precious brain cells is on the minds of Cranbourne and Narre Warren mums, Tracy Scott and Wendi Emerson every day as they measure, cook and monitor everything their sons eat.
Harrison and Reef were born with phenylketonuria (PKU) and cannot break down foods containing protein.
Sufferers of PKU have received a Federal Government monthly food grant of $250 a month since 2001 to help cover the expensive specialised food products, medication and supplements, but as of 1 January 2016 the grant will stop.
“There are families that literally won’t be able to do this, they won’t be able to afford to feed their child,” Ms Emerson said.
“We are begging the government to reverse this decision which is factually incorrect, the products have not come down in price and are not more readily available,” Ms Scott said.
With about 904 families receiving the grant around Australia, the Government is set to save $3 million a year from scrapping the food grant.
Ms Scott said the monthly grant was a good chunk of the cost of food but didn’t cover it.
“We have to make everything from scratch most parents will try and make burgers or sausages themselves, but I’m a full time working mum and I don’t have the time, so I order pre-made meals from overseas, because no one in Australia makes them but the delivery is really pricey,” she said.
An average delivery will cost Ms Scott $200 on top of food prices.
“My bills from America are usually about $500 every four months just for some of Harrison’s meals,” she said.
“A lot of people think that we can just use vegan products but vegan food is so high in protein we can’t use it,” Ms Emerson said.
“We are begging Tony Abbott to sit down with us and listen and try to understand that what he thinks is readily available is not and what he thinks has gone down in price has not and we have no choice but to feed our kids, we need this food grant,” Ms Emerson said.
The Metabolic Dietary Disorders Association (MDDA) is currently lobbying the Abbott Government to reverse the decision made in the 2015-’16 Federal Budget.
