Coming together for a cause

The Rett Syndrome Awareness Cup is aimed at raising funds for a cure for girls like Gypsy.

By Nick Creely

Get Vicious, or die trying.

That is the motto of Friday 1 March’s special event at the Don Road Sporting Complex in Healesville – the Rett Syndrome Awareness Cup.

In a night where some of the great football characters of the Yarra Valley will come together for a charity match, with the purpose of fighting the devastating disease that is Rett syndrome, Lee Lawrence hopes crowds will come out in their droves to show their support.

“It’s going to very big, we’re certainly excited about it – last year, we (Lee and Tahli) raised over $14,000 for Rett, but this year we want to smash it, and do a lot more through this game,” he said.

“We’ve been working really hard on it, and hopefully on the night the weather’s fantastic, we get a good crowd in and raise some decent money.”

Lawrence – who runs the popular Facebook page ‘Valley Vicious footy banter’, knows all too well the horror of Rett, and along with his partner Tahli, have worked tirelessly to raise awareness, after their daughter Gypsy was diagnosed with the disease at an early age.

Rett syndrome – which is a genetic brain disorder found almost exclusively in females – has a rare prevalence of one in about 15,000 females, and young girls with the disease are unable to acquire new skills and gradually or suddenly lose previously acquired abilities, such as control of hands, and the ability to talk and walk.

“It was something that shocked us at first – Gypsy was fine up to a year old, and then we noticed things weren’t right,” he said.

“There were treatments, and tests, and it went on for ages, and we got the wrong diagnosis, it was a real battle for a while.

“We finally worked out it was Rett – as heartbreaking as it was at the time, it was a relief to realise what we’re working with, and fight it, or try to.

“(So) instead of a little girl growing up normally, the brain just doesn’t develop – in Gypsy’s case, she’ll never speak, is losing the ability to use her hands, and eventually won’t walk. That will happen, but the timeframe we don’t know.

“The life expectancy is very short, the average is around 30, but most don’t make that mostly because of accidents that can happen. They just don’t have the awareness at all.”

With the diagnosis of Rett in Gypsy changing their lives immediately, Lee knew that they had to do something to help find a cure. That’s when he started up his now famous page on Facebook, which has attracted a cult following in the Valley.

“I coached at Yarra Glen at reserve level for four or five years, and with Gypsy, it was really hard work. It was too hard family wise, so I gave up the coaching gig, and Valley Vicious has really been my footy release,” he said.

“It started out small, and then it grew some legs, with some pictures going viral, and it got some support behind it – I then thought, ‘how can I get Rett involved in this?’, and ‘what can I do?’, and that’s where we came up with the stubby holders and stuff like that, and that’s how we made the money last year.

“That got it rolling, and it’s taken on from that. It’s been fantastic.”

Next Friday’s Rett Syndrome Awareness Cup is set to be a cracker, with gates opening at 5.30pm. The first match of the night will kick off at 6.30pm, with a netball game made of the best AFL Outer East Division 1 and 2 netballers.

There will be also plenty of activities to entertain families, with face painting, comedians, a band, DJ and a Superboot competition. Food will also be available, as well as a raffle and jumper action, all aimed to boost funds raised to find a cure.

And at 8pm, the Rett Syndrome Awareness Cup will be played, with the Valley Vicious All Stars – a side made up of a bunch of characters around the Valley – taking on the Croydon North-MLOCC Football Club, with former AFL stars Lindsay Gilbee (who played junior football with Lee) and Shaun Smith all locked in to play.

Lawrence encouraged all the new sides coming into the AFL Outer East competition to get behind the cause, with Officer’s Chris Power locked in for the All Stars.

“Officer have been fantastic, we’ve chatted with their president quite a lot, and they’ve got one player playing which is great,” he said.

“That’s what we’re about; we want all these new teams to get around it. We’ve been trying as much as we can with these new teams, but no footy’s been played so it’s been a bit hard, but we’re keen to get around them too.”

Officer president Nick McLennan said that the club is looking forward to getting behind the event.

“This is a fantastic initiative, and we as a club are very happy to get behind Lee and the crew to bring much needed awareness for Rett syndrome,” he said.

“I know Lee and the crew have done a lot of work with the existing clubs in the AFL Yarra Ranges competition, but I strongly encourage the clubs joining this league to get behind this fantastic cause.

“I look forward to attending the game on Friday 1 March.”

With all money raised going into research into the disease, Lee said they’re not far away from making some significant progress, but acknowledges that there is still plenty of work left to do.

“We had Bill from Rett Australia pop in on Saturday, and he came out to thank us and drop off some banners and stuff – everything we get, we give to them for research, they’re actually not that far off from finding a cure,” he said.

“They’ve found it in mice, but that’s a big step up to a human, but they’re plugging away at it – at the end of the day, it might not help Gypsy, but it might help another little girl down the track.”

Entry on the night is $5, with anyone under the age of 16 granted free entry. For more info, search @valleyvicious on Facebook.

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