Doreen youngster Jesse Dean would have become mentally retarded had his parents not started feeding him an expensive, protein-free diet.
Jesse, now four, has inborn error of metabolism (IEM), a rare and incurable disorder. To avoid brain damage and physical disability during infancy, and seizures and liver failure later in life, he requires a special diet.
His food costs his parents Peter and Tiffany more than $250 a month which, up until now, has been subsided by the federal government.
But on December 31 the government will cut the IEM program, which provides monthly subsidies to help people living with the disease purchase low-protein foods.
Mrs Dean, a teaching student, said she might be forced to put her studies on hold and juggle a part-time job with caring for her three young children to be able to afford Jesse’s food.
“Without the grant, things are going to be very tight,” Mrs Dean said.
“The outcomes are disastrous if he doesn’t eat properly, so we’ll do what we need to do.”
A spokesperson for the federal Department of Health said the program was established in 2001 when there were limited foods available to support people living with IEM.
“There is inequity between recipients of IEM subsidies and other Australians with life-threatening food allergies who manage their diet without funding assistance from the government,” the spokesperson said.
The spokesperson said the availability of appropriate foods for IEM sufferers had increased with some now available in supermarkets.
The Dean family is urging community members to sign a petition to have the IEM food grant reinstated.
To sign go online at: chn.ge/1F7ruVt
