Angelman Rally charity ride is huge success

Despite terrible weather, near constant rain and one small spill, The Angelman Rally has returned home triumphant, having raised thousands for charity.

Xavier Lomas, Graham Trood and Dan Whitley spent two weeks riding from London to Mt. Etna to raise money for AngelmanUK, a charity that supports those affected by Angelman Syndrome, like Xavier’s son Henri.

Originally known as 'Happy Puppet Syndrome' due to the characteristically happy demeanor and stiff jerky movements it causes, it is a chromosome disorder that causes severe learning difficulties, meaning sufferers will require care their entire lives.

The group set off on May 16 after a couple of years of planning, although that didn’t stop a few amusing incidents. "It’s so funny that you plan things like this down to the tinniest detail but you miss so much," Xavier told MCN.

"It was only when we got to Etna that it dawned on me we were going to have to hike to the top. It was daft really but we ended up doing it in the bike gear with armour on. I thought I was going to be sick!"

The return leg wasn’t without it’s complications either when a tumble on a French motorway nearly spelled disaster. "Coming off a slip road, there was patch of diesel and unfortunately someone hit it, ending up on the floor. We had to get a tow off the motorway, to a local garage only to see the slide had ground a hole through the engine cases.

"We thought the trip was over. We banded together though and managed to sort of fix it with a bit of chemical metal at 3am, enabling us to limp on."

With the calamities behind them the group pressed on to get back to the UK for their homecoming fundraiser. Over a hundred people came from all over to meet the group on their return as well as children with Angelman Syndrome.

"Returning home was an amazing feeling and when Henri took a couple of steps towards me – well there wasn’t a dry eye in the house. It was great to see everyone – even the local Mayor came down. All told we’ve raised well over £5000 and we’re now planning another trip in 2021."

Speaking with MCN earlier this year about Henri, Xavier said: "It’s a pretty serious condition and he’ll need lifelong care and will never speak. It was kind of a bombshell and we spent two months in hospital, which was pretty horrible.

Parents Xavier and Corinne with Henri

"I wanted something positive to look forward to and if anything this trip is a kind of therapy and something of a coping mechanism, which I thought we could raise some money along the way with. We chose AngelmanUK, who support people like myself and educate people about the condition," he explained.

AngelmanUK is a small charity, receiving no funding from the government and relying solely on donations. All the trustees are volunteers too, meaning 100% of the money goes to those that need it. One of the key roles performed by the group is support of families, providing a 24/7 helpline and email support line.

Xavier then went on to say: "Whilst I was pondering the idea over a couple of months, two of my biker friends said they wanted to get involved and would support the ride. One of them suggested Mount Etna as just a decent location. It has no relation to the charity - it just looked like a cool place to go!" 

A poster for The Angelman Rally

Originally planning a small-scale fundraising effort for those close to him, Xavier and his friends were then approached by a marketing company who gave the 3315 mile rally greater publicity and a platform to raise more money.

"It was just three lads going for a ride and seeing what pennies we could raise," Xavier explained. 

"We were having a beer in the garage, tinkering on a bike and that’s how it came about. As it’s the first ride, we want to do it as just the three of us, however several biking groups have been in touch asking if they can take part, as well as people from Australia, Croatia and India. Maybe next time we will open it up to more people!"

AngelmanUK offers care to the sufferers of the syndrome

Andrea Baines is the Secretary for AngelmanUK and said: "We are obviously delighted about it and always are when people can raise money for us. I don’t know if anyone’s done anything with a motorbike before, so this is a first for us. 

"We’ve had a friend of Xavier get in touch already off the back of the event’s build-up. He runs a street food stall and is now raising money for us through that as well."

If you would like to donate to the cause, you can visit the Just Giving page here.

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