But his future is very much in the hands of medical research.

Like his mate Tobias, 6, Harry has Prader-Willi Syndrome (PWS), a life-threatening genetic disorder that impacts on muscle development, growth and appetite.

This Friday, May 26, is national awareness day of the condition, when people are encouraged to “go orange for PWS” and donate money to fund medical research into a cure for the syndrome.

Tobias is always hungry and never feels full. Mum Maria Punturiero has to monitor him constantly to ensure he doesn’t eat to a dangerous level. He is only allowed to have 60 per cent on the calorie intake of an average child.

“It's difficult when all the other kids are having cake and chocolate. I’ve had to become very creative. I recently made him a cake made entirely of fresh fruit,” she said. 

She said it can get very challenging for some families, who have to lock cupboards and fringes. 

Harry hasn’t reached the constant hunger stage yet. His mother Sonya is hoping for technological breakthroughs, such as appetite suppressants, before he gets to that stage.

But the family have already had a tough time. 

“He was diagnosed at four weeks old, and we had to make a lot of trips to Sydney for treatment. That was a real struggle as we have four kids. But Harry is much better now,” she said.   

PWS is a genetic disorder that occurs in about one out of every 15,000 births.

It affects males and females with equal frequency and impacts on all races and ethnicities.

Most people diagnosed with PWS require occupational therapy, speech therapy and physio therapy due to developmental delay and poor muscle tone.

The constant hunger and never feeling full creates a high risk of obesity. 

Tobias seems to be taking it all in his stride. He started kindergarten this year and is loving the experience. 

“He knows he’s a bit different to the other kids and we’ve taught him he has to be careful with what he eats,” Maria said. 

“It can be tough on him sometimes because with PWS there are other medical conditions that can result from it.”

Maria and Sonya have formed a close friendship, and are active in raising awareness of PWS and advocating for other families affected by the syndrome. 

Maria’s workplace Dom Motors will be orange-ing it up this Friday, and you can pop by if you want to support the cause. 

There is also the national website http://go-orange.org.au/, where you can make an online donation, buy merchandise, sign up as a fundraiser and share awareness on social media.