Rohanne Tiefel discovered the power of social media when she began an appeal to raise funds for her young son Lucas’s battle with an incurable disease.
Soon after launching the appeal she saw a message from a woman in Europe offering help.
“I hit Belgium in under two hours of starting the campaign,” she said.
And it wasn’t just anyone.
She was contacted by the Instagram and social media worker for international singing group El Divo.
“She said ‘Hi, I’m in Belgium, whatever you need just contact me,” Mrs Tiefel said.
“Anything we now post El Divo puts around the world.
“We have gone from no one knowing anything to people from everywhere [being aware].”
Just over a year ago Lucas, one of their twins, was diagnosed with the rare disease Sanfilippo Syndrome Type A – a degenerative condition that causes fatal brain damage and affects just one in 70,000 children.
The condition has no known cure or treatment and the life expectancy for children is just 12-20 years.
I hit Belgium in under two hours of starting the campaign.Rohanne Tiefel, Orange mother
Mrs Tiefel said she and husband Philip had spent the year devoted to trying to raise funds to pay for research into finding a cure.
“We have used local papers, Facebook, Instagram to keep putting the word out about what happens to the kids. We’ve raised $24,000,” she said.
That’s been through a variety of events and from donations including funds from the Tractor Trek, a pop up pantry at Woodstock Show plus events in Sydney.
The Commonwealth Bank recently granted $10,000 to them.
She said $3 million had been raised in Australia for research into the disease which is mainly conducted in the US.
“They are currently running the very first Australian trial,” she said.
Mrs Tiefel said they did not have a fundraising target.
“The goal is a cure, how do you put a financial figure on a cure,” she said.
Mrs Tiefel said it had been a tough year but it had some brighter moments.
“Lucas has learned to walk, that was our Christmas present. At just over three he has learned to walk,” she said.
“Every day is improving, any development is exciting, every day we see a new trick.”
She said Lucas’s twin Dominic was not affected by the syndrome but he was a confirmed carrier of the inherited disease.
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