Zoe Petropoulos starts charity to raise money for neurofibromatosis

A Donvale teen who suffers from a rare genetic disorder has started a foundation to raise awareness of the condition and drive fundraising for research.

A Donvale teen who suffers from a rare genetic disorder has started a foundation to raise awareness of the condition and drive fundraising for research.

Zoe Petropoulos, 18, was receiving treatment for neurofibromatosis earlier this year when her mum, Anne, decided to donate money for research into the disease.

But it turned out to be harder than they thought.

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“My mum thought of the idea when I was in hospital in June after an operation,” Zoe said.

“She just wanted to donate somewhere and realised there was nowhere at all so she had this idea that sounded absolutely crazy but I just really liked it.”

Donvale teen Zoe Petropoulos has set up a new foundation called Flicker of Hope to help raise money for research into neurofibromatosis. Picture: Sarah Matray

And so A Flicker of Hope was born.

“Mum and I have worked on it together quite a bit and wanted to start it up because no one knows about it but there are so many people out there who have it,” Zoe said.

It is believed about 10,000 Australians have the condition, which causes tumours to grow on nerve endings throughout the body.

It can affect major organs and lead to a variety of serious and debilitating health issues, including blindness, loss of mobility and disfigurement.

Zoe, who was diagnosed when she was about three months old, said she had been lucky so far.

“I have a lot of co-ordination problems and a few internal tumours. I have had two removed, one of which was a regrowth from the first one,” Zoe said.

“But some people can end up in wheelchairs and can have problems with how their bones grow. I’m very fortunate not to have been affected more severely."

Flicker of Hope’s first order of duty will be to fundraise at Manningham Council’s Carols by Candlelight at Ruffey Lake Park on Friday and a community carols event in Warrandyte on Saturday.

Check out flickerofhope.org.au for more details and to donate.

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