Paul and Amy Tandberg don’t know what the future holds for their four-year-old son Charlie, but one thing is for sure – they’ll always have the Red Knights looking out for them. RUSSELL BENNETT reports on their remarkable story.
NOTHING takes the intimidation factor out of a big, bad bikie better than kids’ face paint.
The Red Knights are far from a stereotypical motorcycle club though.
On 22 November, members from across the state will come together as one for Charlie Tandberg’s special day, the third annual ‘Charlie’s Ride’.
Charlie is the four-year-old 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.”
In addition to the time he devotes to the Warragul brigade, Paul is also an emergency management officer at Baw Baw Shire Council and he receives all the support he needs from his employer through countless late nights and hospital visits. But the past 12 months have brought some good fortune for the Tandbergs – those hospital visits for Charlie have become less frequent.
Over the past two years, ‘Charlie’s Ride’ has just grown bigger and bigger. It’s essentially a pilgrimage for Red Knights members to ride from various parts of the state into the Warragul CFA station for a day of fun and excitement – and it’s all just for Charlie.
“They’re already doing something for their community with many of them being volunteer firefighters,” Amy said.
“They do lots of fund-raisers for kids – this certainly isn’t the first one they’ve done.
“But honestly I don’t think they care about whether people think they’re good guys or bad guys. They know they’re good guys and they’re just doing what they want to do – they’re doing what they love.”
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 converge on the Warragul fire station.
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.
Ross is helping to raise money for the ride by getting sponsored to grow his mohawk, which he will dye bright fire truck red on the eve of the event. Then, on the day, the Tandberg family will shave it off.
Amy’s stepfather – one of the founders of Charlie’s Ride – is also a fire-fighter and a Red Knight. He’s putting his woodworking skills to great use and doing something special to be auctioned off separately on the day.
“The owner of Salts of the Earth in Pakenham is also running a day where he’s putting on different things and a percentage of what they make from that day is being donated to the ride,” Amy added.
“It’s all pretty awesome because Andrew, who owns Salts of the Earth, didn’t even want us to know – he just wanted to help.
“Last year a guy named Jason, who’s not a member of the Knights but a friend of a lot of the guys, went around and collected heaps of items that raised a lot of money.
“This year he’s managed to get all but one of the major prizes for the raffle.
“He’s got lots of connections but he just stood back. Somebody had to point him out to us because we didn’t even know.”
The Narre Warren fire brigade donated money last year as well. Again, all they wanted to do was help.
Warragul CFA brigade members also give their time generously on the day – setting up, cleaning up and packing up.
The major prize for this year’s Charlie’s Ride auction is a one-off, custom airbrushed helmet which is sure to raise plenty for the cause if last year’s version is anything to go by.
There’s a real buzz around the town in the lead-up to the event, and the Tandberg family – Paul, Amy and Charlie’s big brothers Zach and Lachlan – can’t wait.
“It’s for everyone – you don’t have to ride,” Amy said about Charlie’s 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.
One of the lasting images of last year’s ride was a group of bikers covered in bright face paint and glitter strolling proudly into the pub after a long day of raising money and awareness for Charlie.
Some people will cross the road when they see a bikie walk down the street but just remember; there’s more than meets the eye to these guys.
