By RUSSELL BENNETT
DO YOU think the worst when you hear the word ‘bikies’?
Some people will even cross the road when they see a bikie walk down the street, but the Red Knights are doing so much to remove these misconceptions – to right so many illogical wrongs.
The Red Knights International Firefighters Motorcycle Club (RKMC) is simply a club for firefighters and their families who ride motorcycles.
Having started in Massachusetts in the early 1980s, it’s the largest fire service motorcycle club in the world and membership is open to all firefighters; active, retired, volunteer or professional.
Next month, two Australian Red Knights chapters – 5 (Narre Warren) and 6 (Sale) – will band together for the third annual ‘Charlie’s Ride’ – in honour of four-year-old Charlie Tandberg, the son of Warragul CFA captain Paul.
He has a chromosomal disorder called 15q15.2q21.3 Deletion Syndrome. It doesn’t even have a name because, to date, he’s the only person in the world who has ever been recorded with this exact deletion.
He’s severely intellectually and physically disabled and has low muscle tone. His gross and fine motor skills are delayed, his vision is poor and he suffers from random seizures.
“Everything was fine during the pregnancy with Charlie – everything was looking good and then at 33 weeks I had pre-eclampsia and they had to deliver Charlie straight away,” mum Amy told the Gazette.
“Until then we didn’t even know anything was wrong.
“He was born seven weeks early and they thought the issues he was having were just because he was premature.
“The emergency neo-natal transport team from Melbourne came and got him and he went to the intensive care unit at The Mercy.
“I followed the day after and it still just looked like he had problems with breathing and feeding due to his prematurity.
“You couldn’t tell anything else was going on and he picked up a bit.
“After about nine days in intensive care he was transferred back to the nursery at Warragul because they’re special care as well. It was then that you could see in his face that something was different.”
Amy and Paul met with a geneticist, a genetic counsellor who looks at what’s missing and what that means.
“We were just told that he would be severely intellectually and physically disabled, and that he would probably not walk … although he’s making some pretty good progress there,” Amy said.
“We don’t know what the future holds – we just have to plod along.
“We meet with the geneticist every 12 months in the hope that in that time someone is discovered with something.
“Hopefully it would be someone older that they’ve done chromosomal testing on but so far … no-one, and the geneticist can’t tell us anything.
“So far all Charlie’s organs are coping and everything’s going along and he’s really happy and, for now, that’s his story.”
Ross Cohen is the president of Chapter 5 of the Red Knights, who wear the patch of the Maltese Cross – the international symbol of firefighters. He first heard about Charlie’s story through the youngster’s grandfather, who is in Chapter 6.
“Realistically, we’ve got Medicare and that’s great – they do a lot for us,” Ross said.
“But with such a rare thing – it doesn’t even have a name, just a series of numbers – they don’t know what funding is needed.
“That’s why we became involved.”
Ross added that: “Over the past 12 months I’ve seen a massive change in Charlie.
“He’s observing a lot more and he’s taking in a lot more.
“We were at his birthday and he was sitting on my lap.
“You’d ask him a question and he’d look at you and smile. Before that there was just nothing.”
To assist Charlie’s family with the purchase of a modified vehicle – big enough to fit a new wheelchair, members of the Red Knights Australia 5 and 6, in conjunction with the Warragul Fire Brigade, will be holding the next instalment of ‘Charlie’s Ride’ to the Warragul Fire Station on 22 November.
“The sound of the bikes coming into town all together just draws people in – they follow them in,” Amy said.
“This event is for everyone – you don’t have to ride.
“You just come along – it’s child-friendly and there are lots of things to do.”
“We’ve made friends that we’ve only met through this but it feels like we’ve had them in our lives forever.”
For more information, search for ‘Charlie’s Ride 2014’ and ‘Charlie’s Journey’ on Facebook.
