In Australia approximately 1,500 people are living with PWS, and there are others out there who aren’t even aware they suffer from it.

It’s a disorder that leaves one in a state of perpetual hunger – no matter how much food is eaten, a person living with PWS will never feel full.

Three local children are living with the disorder – Isla DeBenetti, Harry Dal Broi, and Tobias Kelly.

Mothers Renee DeBenetti and Sonya Dal Broi explained Prader-Willi Syndrome to The Area News.

“It’s a genetic disorder where most are diagnosed at birth,” Ms DeBenetti said.

Isla was diagnosed by three weeks of age, and Harry at four.

Doctors had suspected something was wrong with Harry in his physicality, but “they couldn’t pinpoint what it was,” Ms Dal Broi said.

“Though bloods were done at day three, the results took weeks to come back.”

Ms Dal Broi and Ms Debenetti had normal pregnancies, and Harry and Isla passed their initial Apgar tests, leaving both mothers baffled.

“It’s like a freak of nature – it’s not something we carry,” Ms DeBenetti said.

“But, if we were to have another child, I could have a genetic test to see if there is a possibility of PWS again.”

“You hear stories these days of people only being diagnosed when they’re older – as late as 20,” Ms Dal Broi said.

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But, for a child living with PWS, it can be agony.

“Around the age of three, they get this desire to eat and they never know that they’re going to be full,” Ms DeBenetti said.

The disorder can affect children in many ways: low muscle tone, speech, behaviour, intellectual ability, as well as delays in all their milestones – including physical development.

Medically, they can be prone to scoliosis, eye problems, and respiratory and sleep problems.

“They also don’t register temperature properly and may not know when they’re sick,” Ms Dal Broi said.

And, of course, they live with an insatiable appetite.

Ms DeBenetti and Ms Dal Broi both adhere to strict routine and strict diets.

If they're not there to supervise, the kids will grab whatever food they can reach.

“They’re pretty sneaky, clever little things,” Ms Dal Broi said.

The children are only allowed to eat 60% of what an average child of their age can eat as they don’t have the stamina or muscle tone to burn it off afterwards.

“The odds are basically against them because all they want to do is eat and they can’t burn it off,” Ms DeBenetti said.

Isla and Harry also need to see a number of specialists including speech pathologists, occupational therapists, and physiotherapists.

And, both children need growth hormone injections six to seven nights a week.

“To ensure they are growing – that their hands and feet are in proportion to their bodies,” Ms DeBenetti explained.

Mothers Ms Dal Broi, Ms DeBenetti, and Ms Punturiero are currently running a raffle to raise funds for research and development into PWS.

Tickets are on sale $2 each or 3 for $5, and drawn Friday May 25.

The major prizes up for grabs are: a $500 Harvey Norman Voucher – Donated by Rawlinson and Brown; a $500 Collier & Miller Voucher – Donated by Collier and Miller; and a $300 Caltex Fuel Voucher – Donated by F & RN McNabb.

Ms Dal Broi and Ms DeBenetti encourage everyone to support the cause and wear orange for PWS day on Friday May 25.

“A lot of people do not know what PWS is and so we’re trying to raise awareness and funds to go towards the association and research to find a cure,” Ms DeBenetti said.

If anyone would like to make a donation or purchase tickets, please contact Sonya Dal Broi on 0447 636 550 before Friday May 25.

For more information about Prader-Willi Syndrome (PWS), please visit www.pws.org.au and www.fpwr.org. Donations can also be made online.