EATING protein is something that most of us take for granted, but if young Hugh Chinnery eats even a small amount of it he risks brain damage due to a rare metabolic condition called Glutaric Aciduria Type 1 (GA1).
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Three-year-old Hugh needs a special low-protein diet. The foods he must eat can be expensive and hard to source.
Up until now his parents have been in receipt of federal government assistance, in the form of an Inborn Error of Metabolism (IEM) grant, to help them manage Hugh’s special dietary needs. But the Chinnerys were “devastated’ to learn recently that this funding has now been cut.
“Management of Hugh’s condition involves formula, medication and most importantly a medicallyprescribed low-protein diet to ensure he maintains low lysine (an amino acid that affects him) as well as low tryptophan levels to ensure he does not get brain damage,” his mother Alana said.
“Hugh is on mediation as well as a daily supplement formulae and the low protein diet. We have managed him since birth, but this is a life-long condition. “So far, with strict management, and the assistance of the IEM grant, Hugh has managed to avoid any complications.”
So, she was shocked when she got a letter from the Federal Health Department on May 18 telling her that the IEM grant to families would cease by the end of the year.
“All I got was a letter in the mail advising me that the grant was to be cut. I am concerned that this grant was cancelled without consultation with anyone that could truly understand the implications,” Mrs Chinnery said.
“We are devastated not just for us as a family but for all the families around Australia that this will affect in a negative way.
“While we are not absolutely reliant on the grant - there are many families who are.”
The IEM grant has wider implications, not just for sufferers of GA1, but also for people with the more common condition of Phenylketonuria (PKU), which affects one in 15,000 Australians She said the low-protein diet was expensive and could only be sourced online.
“It is all very well to say that rice milk and cornflour are available from the supermarket but this is not a true representation. This is a medically prescribed diet,” she said.
“There are only three suppliers of the special low-protein foods. I can’t get most of it locally, so my big concern is that I have to order these specific products online and it is expensive.
“Even if you don’t have the financial resources - without this grant - people are going to financially struggle and possible go off diet, which could have disastrous consequences for their health.
“It would be devastating for us if something went wrong. We have been very lucky with Hugh due to strict management and sticking by the three things - diet, formula, medication and quick access to the hospital if he becomes unwell.”
Mrs Chinnery said she would like to see the grant reinstated and was disillusioned with the government that they had cut the grant without adequate consultation.
“I am not angry at the government, but I feel sad that they have made such an uneducated decision,” she said.
“From what I have read and perceived - they have based their decision on a dietary handbook because to the outsider it can be perceived that these products are easily accessible - but there are just so many variations on the foods. I don’t think it is a fair call to take the IEM grant away - and especially without consultation.”
“I am worried about people with these conditions who are on welfare payments - who are already struggling to pay for their general needs - do they go off diet and risk becoming more disabled as a result?”