Bacchus Marsh resident and Ballarat teacher’s aide Heidi Nuske was born with a form of Inborn Error of Metabolism and since 2001 she and around 900 other people with the disorder received $256.75 a month to help with the high cost of food.

Managing the condition requires a strict commitment to a diet of carefully weighted synthetic low-protein food and formulas.

Often the food needs to be shipped in from overseas and the subsidy Ms Nuske receives covers only a fraction of the wider cost for the food. 

However, the funding was cut in the most recent federal budget. 

“They didn’t consult any patient bodies about it, they didn’t consult anybody. None of us had any idea,” Ms Nuske said. “It is a huge shock. It made me feel really anxious.

“As a teacher’s aide, I am on a pretty tight budget as it is. I am now looking for a house in Ballarat and I am thinking about how I will afford that, plus all my speciality food, plus fruit and vegies I need to get into my diet.”

Ms Nuske is restricted to a total of 10 grams of protein a day. While the formula required will be subsidised by the government, Ms Nuske said having one without the other meant it wouldn’t work.  

The ramifications for going off diet can vary depending on the type of IEM, however, in all cases, the impact can be huge. 

“I have never been off diet for a very long time, but I have been long enough to feel the effects,” she said. 

“So for me, I got anxiety, extreme panic attacks, headaches, couldn’t focus and had fogginess...”

Ms Nuske said given the relatively small funding figure she was hopeful the government would change its decision. 

“It is pretty stressful ... I am really concerned about those that might be on welfare payments or extremely low incomes. They rely on this even more than I do,” she said. 

matthew.dixon@fairfaxmedia.com.au