Raising awareness of Prader-Willi Syndrome in Leeton

IN THIS TOGETHER: Leeton's Tobias Kelly holds little Harry Dal Broi from Griffith. The pair both have the condition known as Prader-Willi Syndrome. Photo: Contributed

IN THIS TOGETHER: Leeton's Tobias Kelly holds little Harry Dal Broi from Griffith. The pair both have the condition known as Prader-Willi Syndrome. Photo: Contributed

IMAGINE living with the feeling of eating all the food in the world and never feeling full. 

That’s the daily reality for young Leeton resident Tobias Kelly. 

Tobias has Prader-Willi Syndrome (PWS), which is a genetic disorder that occurs in about one out of every 15,000 births.

Many residents in Leeton shire would recognise Tobias and would possibly know about his condition. 

His mother Maria Punturiero is doing her best to ensure more awareness of PWS is put out into the wider community. 

May 26 is the national awareness day of the condition and people are encouraged to “go orange for PWS”, which is exactly what Tobias’ classmates and peers at St Joseph’s Primary School will be doing. 

Tobias 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,” Ms Punturiero said. 

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

“There’s so many people who know Tobias because he’s such a friendly kid. 

“He’ll talk to anyone.

“We’re just trying to create more awareness of PWS and what it is.”

PWS affects males and females with equal frequency and affects all races and ethnicities.

It is also recognized as the most common genetic cause of life-threatening childhood obesity.

“For someone his age, Tobias is very aware of what he can and can’t eat … while he still has that feeling of not being full, he knows what sort of food is better for him and what isn’t,” Ms Punturiero said. “It’s something we’ll always have to be careful with.”

While it certainly isn’t easy having a child with such a condition, Ms Puntoriero and her family take comfort in knowing there are others out there in a similar situation. 

She is close with mothers in Griffith whose children have PWS and they have built a strong support system. 

For those Leeton shire residents wanting to play their part they can dress in orange on May 26 and raise a dollar or two for PWS Australia.

Merchandise will be available in some Leeton stores.

To donate to the organisation visit https://www.gofundraise.com.au/payments/donate/beneficiary/1814.

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