Between one in 1,000 to one in 5,000 children are born with Noonan Syndrome in Australia.
A rare genetic condition, like many, Tom Drakopoulos from the Queensland Hellenic Charitable Trust had never heard of it, until someone in his immediate circle was affected.
“One of my co-trustees, his little grandson was born with Noonan Syndrome – you don’t hear about some of these diseases until somebody close to you has an experience,” Mr Drakopoulos told Neos Kosmos.
The condition often affects the heart, facial features, and in a third of cases, mild intellectual disability.
To help raise awareness and much-needed funds, Mr Drakopoulos and his co-trustees have organised a charity event this month for HeartKids, the only national profit for purpose charity dedicated to supporting children, teens and adults affected by congenital heart disease – the leading cause of infant death in Australia – in navigating what can be a challenging journey.
Taking place on 31 May, a highlight is sure to be Greek singer Dimitris Basis’ live performance.
“When he was here last year we discussed the idea, and he said ‘yes, whatever I can do’. He was more than happy to help, and he’s doing it virtually for free,” he explained.
Heading Down Under for the Romiosini Tour, Basis will treat attendees to a performance of his own material, as well as covers by the likes of favourites Pashalis Terzis and Notis Sfakianakis.
“He does those songs justice,” he said, “and he gives people kefi without going too crazy on the stage!”
On the night there will also be lucky door prizes and raffles.
While it will all depend on numbers, the Trust is aiming to raise anywhere between $10,000 to $20,000, all of which will assist HeartKids to continue their work in educating and supporting children and families, as well as funding lifesaving research into congenital heart disease.
The fundraiser is a first for the Trust, in what is henceforth expected to be an annual event raising money for various worthwhile charities.
Mr Drakopoulos has personally been offering his time to the Greek community in Queensland for some 50 years, having started off an as alter boy, and going on to serve on boards and as a counsellor.
“I have been deeply involved,” he said. “I love the community and I just love trying to help people.”
When: Friday 31 May, doors open at 7.00 pm (RSVP by 17 May)
Where: Mansfield Tavern (Wecker Rd, Mansfield QLD)
Cost: $90.00 p.p. includes entertainment and food
To book: Call Jack on 0432 214 206 or Tom 0407 758 730
For more information on HeartKids, visit https://www.heartkids.org.au