Like many other 10-year-old boys, Springwood's Riley Fryer loves telling jokes, playing soccer and hanging out with his mates.
But he was born with a metabolism disorder that only one in 185,000 Australians have - Maple Syrup Urine Disease (MSUD) - preventing his body from processing amino acids properly.
It's so rare that only 985 families in Australia have at least one person with the condition.
In order to avoid symptoms like lethargy, nausea, fainting and seizures in the short term and possible brain damage, comas and other life-threatening conditions in later life, Riley must stick to a strict - and costly - low protein diet.
While his medications remain covered by the Pharmaceutical Benefits Scheme, his mum Faith Hill was distraught upon receiving a letter from the federal Department of Health late last month.
It said the Australian government's monthly Inborn Error of Metabolism Program (IEMP) payments, which help cover part of the cost of providing the special foods Riley needs, would cease from January 1, 2016 as part of budget cuts.
Ms Hill, who also has two children under five, said the decision would add between $700 to $800 per month to her family's grocery bill.
"It is really unfair for the government to do this and there was no consultation at all," she said.
"Riley relies on low protein food products and formulas that are produced overseas and can only be ordered from two or three companies in Australia.
"So they are very expensive - on average they cost about seven times more than products you find in the supermarket - but he can't do without them.
"He is allowed only six grams of protein every day - any more than that and he can become ill and his body will produce toxins that can build up in the brain over time.
"I can't understand the logic - the IEMP payments are $260 per month to less than 1000 families across Australia, so the savings for the government will be insignificant compared to the impact it will have on us."
As for Riley, he has a simple message for the government. The bright and bubbly Year 5 Ellison Road Public School student said: "I'd like to see [Prime Minister] Tony Abbott come and try having my diet for a week and seeing what it costs!"
Riley, who requires a monthly blood test, said sticking to his diet has meant he has been able to avoid going to hospital in the past three years.
"It's lucky I don't have a sweet tooth, but once in a while I'm allowed to eat skittles and sometimes chips - I love chips!
"When I was eight days old I was rushed to hospital and put on full dialysis and that's when I was diagnosed with MSUD.
"I used to go to Westmead Children's Hospital so often that I had my own toys there and I knew the doctors' names."
Ms Hill said she wrote to Member for Macquarie Louise Markus about the impact the decision to cut the IEMP payment will have on her family, but is yet to receive a reply.
She is urging people who feel strongly about this issue to sign a petition on the Metabolic Dietary Disorders Association's website: www.mdda.org.au.
