Two years ago William Bragg was diagnosed with a very rare condition called Cranio Frangioma.
Neurosurgeon Dr. Cindy Malloy successfully removed a benign tumour which had destroyed his pituitary gland, meaning his body can no longer produce the necessary hormones to make him grow.
William now requires daily injections of growth hormone for his body to grow and his bones to get stronger but he tells us,"�taking medication is easy, but I don't like the injections at night. It hurts because I have a lot.
The problem for William is that while the drug, known as HGH, is available on the heavily subsidised pharmaceutical benefits scheme, he doesn't qualify for it because he doesn't meet the Federal Health Department's strict eligibility conditions - in other words, he isn't short enough. Yet!
And it's having a terrible impact on the quality of his life. The only way he will become adult and be able to function properly is to have access to these drugs.
Williams' parents say they "think it is callous and mean spirited to say if these kids get worse then the government will help them."
So William's mum Susan, his dad Greg and step dad Greg Marshall, are all having to pay for the very expensive drug themselves. A small vial lasting one week, costs three hundred dollars.
"We've written letters and get the same thing, lips service. Sorry come back later. In the meantime, our son doesn't need it later, he needed it a year and half ago," says Greg.
Federal Liberal MP Christopher Pyne is trying to get the Health Minister Nicola Roxon to have a change of heart for William and four others in Australia with the same rare condition that needs HGH.
"If they gave William HGH he wouldn't need to worry about getting sicker, or iller, or short because he didn't have it. They are putting the cart before the horse. Expecting him to get worse before he gets better, it seems incomprehensible. We are dealing with people's quality of life, self esteem and enjoyment of life. For small change, for low cost, at least 5 lives in Australia will be dramatically improved," says the MP.
He estimates it would cost the government an extra $200 thousand dollars a year, a tiny fraction of their $20 billion dollar budget surplus.
"They don't think about the children themselves and the impact the small change will have on the lives of fellow Australians," he added.
William meanwhile, is trying to lead as normal a life as he can. He has managed to grow a couple of centimetres thanks to the financial sacrifices made by his family, but they are worried what could happen if they can no longer afford to pay for the drug.
"If they help him now, in the next 20 years he will be able to get to full potential. If they don't, he will be a burden on health system," says Susan.