An awesome tiki ‘beach’ bar has helped a Uttoxeter man who is “trapped in his own body” with motor neurone disease revive his social life.
Nick Brittlebank has lived with the crippling disease for more than two years and can no longer go out at night to socialise with friends.
He now almost completely relies on a ventilator to breathe, is effectively paralysed from the neck down and could die any day.
But brother-in-law Kevin Dunning has ensured the 46-year-old can still enjoy a social life by building a Hawaiian-style bar in Nick’s back garden, where his pals spend their Saturday nights.
Nick drew on his years of experience as a builder to design the wooden feature at his Lark Rise home and source the materials.
It comes complete with a range of beer pumps and lights up in the dark so parties can carry on late into the night.
Nick said: “It’s a massive release for me to be able to forget about MND for a few hours every Saturday evening and enjoy precious time with family and friends.
“Not being able to go out at night has been tough, but I’m so grateful to have such supportive family and friends.
“With their help, I’m making the most of every day.”
Nick’s wife, Sue, 48, said: “With Nick’s condition being as it is, we can’t go out to the beach, so we’ve brought a beach bar here.
“When I wake up on a Sunday morning, I really feel like I’ve had a night out and it’s so important for Nick to have a social life.”
MND has been made famous by legendary physicist Stephen Hawking, who remarkably survived with the illness for more than 50 years before dying this year. Most sufferers die within the first year of diagnosis.
Like most people with MND, Professor Hawking lost his speech – and his robotic voice machine almost became his trademark.
But Nick has ensured Sue and 12-year-old son Ryan will never have to live without hearing his voice with a specialist audio bank.
He will record 7,000 words, so when he eventually loses speech and communicates through a machine, his voice will still ring out.
Funding for the machine has been secured through the MND Association charity.
Sue said: “If I was listening to a robotic voice, it would feel like Nick wasn’t really there, so it’s really important I can still hear him after his voice is gone.”
Nick also has a special computer he controls via a sensor between his glasses that points the mouse cursor wherever he looks.
Nick’s charity exploits continue with carer’s skydive and MND Association walk
Nick is urging Uxonians to get behind his ongoing fund-raising exploits in aid of a vital charity supporting families affected by MND.
Having raised more than £1,000 for the Staffordshire branch of the charity, the next instalments will come courtesy of a sponsored skydive and the annual MND Association Walk to D’feet event.
Nick’s former carer and neighbour, Alex Doherty, will jump out of a plane at a Nottingham airfield on Saturday, June 23 after being inspired by Nick’s positive attitude to life.
And on Saturday, June 9, scores of MND Association supporters will walk or wheel their way round Cannock Chase in a huge sponsored walk.
Uttoxeter’s biggest supporter of the Walk to D’feet event was MND sufferer Brian Rowe, who died last year after an inspirational eight-year battle against the disease, aged 76.
Nick said: “It’s a privilege to think someone cares enough about me to jump out of a plane for this cause. Alex’s bravery is amazing.
“And the sponsored walk will just not be the same without Brian. We grew close after I was diagnosed and it won’t just be me that misses him this year.
“He raised a lot of money for the MND Association and it’s so important. They’ve supplied my electric chair and my voice bank without any quibbles whatsoever – that’s an enormous weight off me and my family.
“The Staffordshire group offers us all an outlet to meet people going through the same thing we are and give us someone to share our problems and experiences with. You can’t put a price on that.
“I’d really like people and businesses in town to pledge some money to the cause, which one day aims to find a cure.”
Alex, 25, said: “The Brittlebanks are one of the happiest families I know, despite something so awful happening to them.
“You just wouldn’t know Nick was at the end of his life – he’s so positive and it’s absolutely inspirational.
“Having seen first-hand what MND has done to Nick, I want to do my bit to fund research that will hopefully one day find a cure.”
People can donate to Alex’s cause online at www.justgiving.com/fundraising/alexandradoherty
More information about the Walk to D’feet event and how to get involved is online at www.mndassociation.org/mnd-event/walk-to-dfeet/
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