Zoe Petropoulos grew up to understand that there is no dream too big, and no challenge too great if you are prepared to work hard for it.
This was a conviction instilled in her by her parents: father Con Petropoulos, who is a living example of dreams that come true, and the determination of her mother, Anne Petropoulos, to bring about change, starting from home.
The young Australian of Greek descent, was born in Melbourne 20 years ago with Neurofibromatosis (NF), a rare genetic disorder that very few have heard of, and even doctors struggle to understand, due to the lack of information and research in this field.
Affecting approximately 10,000 Australians and at least 2.5 million people worldwide, Neurofibromatosis is a condition which causes tumours to be created in the brain, spinal cord and nerves. Though these tumours are usually not cancerous, they can cause bone deformities, learning disabilities, hearing and vision loss and chronic pain throughout the body.
The pathway for each person affected by it, is both different and unpredictable, and fear of what may happen is significant.
After experiencing major operations due to this rare condition, Ms Petropoulos and her family decided that if research was needed to give hope to all the people suffering in Australia, and those yet to be born, they would have to be the ones to kick it off, as there was no one else doing it.
The family established the charity “The Flicker of Hope Foundation” in 2018, and until today they have raised one million dollars. Every single dollar is donated to research that is happening for the first time in this field, and will give insight to the medical community to better understand the disease and how to treat it, in order to improve the quality of life of those impacted.
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Doctors left in the dark
Ms Petropoulos was diagnosed with NF at four months old. “I went to the doctor for a different issue and the doctor that was treating me, who was there when I was born, noticed a few patches on my skin that weren’t there before. This led to further investigations and finally to my diagnosis,” Ms Petropoulos told Neos Kosmos.
As she got older there were more patches on her skin, her mother, Anne Petropoulos added, and then when she was 12, the first tumour, the size of golf ball, was discovered and removed from her sinus cavity.
MRI scans showed five more tumours. “There is not enough research to know what we can do about these tumours. Because they grow on nerve endings, they have found that if they remove a tumour, they tend to grow back and sometimes even multiply.”
The most frustrating thing about living with this condition is that there is hardly any knowledge about how to treat it and what to expect, her mother explains to us as she describes how doctors are left in the dark due to lack of research.
It was after the second operation, when Ms Petropoulos was 15, that her mother felt that this lack of knowledge was unacceptable and they had to do something about it. With a commitment that the family business ‘Delta Group’ would donate $100.000 every year, they established the ‘Flicker of Hope Foundation’ to raise funds but also awareness so people can understand how serious and painful this condition can be, and though considered rare, there are still thousands born with it, every year, across the world.
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A huge responsibility
Through Flicker of Hope, Australians suffering from this disease have come together, no longer isolated and resigned, as they bravely share their difficult journey on the charity’s Facebook page, expressing perhaps for the first time a ‘flicker of hope’ for their future. “So many people have come forward – ‘You are giving us hope’ they tell us. But that is also a huge responsibility for us,” Anne Petropoulos said.
At the moment there is a specialised clinic that opens for a few hours a month at the Royal Children’s Hospital. But there was no port of call for the family when Ms Petropoulos was a child.
“It is very important to have this clinic open for parents. I knew enough about it to get her checked, but I have heard so many stories of people not knowing what to do. The clinic is essential to guide parents and help them coordinate all the doctors they need to see. 50 per cent of people have inherited it so there are many parents who are also struggling with the same condition,” she explained.
“There is a clinic for adults that runs for half a day, twice a month, and that clinic only opened at the Melbourne Hospital in 2018. It’s the adults that are suffering from huge amounts of depression. They have grown up with this. Many of them have tumours that should have been removed years ago. In some ways the adults need more help – because they have never had help.”
Treatment and research
“We connected to some research institutes and decided to work with the Royal Melbourne Hospital, the Royal Children’s Hospital, Murdoch Children’s Research Institute and, The Florey Institute of Neuroscience and Mental Health,” she said
The first research that started off with the contribution of half a million dollars by ‘Flicker of Hope’, targeted the tumours behind the eyes of children. Drug trials have started on 60 children in Australia, with the hope that it will prove effective to treating these tumours, that often lead to blindness.
Another research that began as a result of the funds raised by this charity, is focused on the blood plasma of patients over the age of 18, as they analyse samples of blood and record the changes each year on the same people.
For this research the government has just announced that they will fund its continuation with a grant of a million dollars, Anne Petropoulos tells us with excitement. The doctor told her that if “Flicker of Hope hadn’t started this research we wouldn’t have got it.” A team of doctors from Melbourne and Sydney are driving this research along with research groups in Canada and the USA.
The cognitive side of NF is also an area that has not been explored, even though many of the children who have this condition also have autism, behaviour and learning difficulties, and Flicker of Hope has committed to fund this research, and is just short of $12,000 at this moment.
Anne Petropoulos feels strongly that her family was meant to start this charity, as during this journey, they have been affected by NF from different sources that are unrelated. “God has brought into the family other people that really need help.”
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A voice for all people
“Zoe has become the voice for all these people,” her mother said. In every fundraising event she speaks on behalf of all of them, shining a light on their suffering and raising awareness. She is a charismatic public speaker who speaks to the heart of her audience, and since starting these fundraising events there are several dedicated members of the community and businesses who support her cause. The young Australian, with roots from a small village close to Corinth, was also one of the local heroes to be awarded the Manningham Civic Award for 2019 for her outstanding contribution to the community.
From a very young age, Ms Petropoulos was passionate about singing, acting, and what she loved most about schools was taking part in the theatre productions. Before starting the “Flicker of Hope Foundation”, Ms Petropoulos was very much involved in the ChIPS group (Chronic Illness Peer Support) at the Royal Children’s Hospital, where she volunteered as a leader and organiser, running a variety of activities to support youth with chronic illnesses.
You can read several stories of Australians suffering from this condition who have joined the campaign to raise hope for a better future, on the Facebook page of the Flicker of Hope Foundation.
To read more about this charity and to donate, visit https://www.flickerofhope.org.au/