Why Yorkshireman Jason Liversidge wants to go 100mph in a wheelchair
When he is strapped into a specially-built wheelchair this Friday, aiming to go 100mph, Jason Liversidge will be showing the world he may have advanced motor neurone disease but nothing can crush his spirit of adventure.
The 42-year-old, who is 90 per cent paralysed, is aiming to set a new Guinness Book of World Record over a mile in an electric wheelchair at Elvington airfield.
It is the most daring of a series of challenges he has taken since he was diagnosed five years ago, including scaling Mount Snowdon and abseiling into a 110-ft chasm in the Yorkshire Dales.
Mr Liversidge not only has MND - short he says for Must Not Die - but the rare genetic Fabry disease, which can also be life-threatening.
At home in Rise, East Yorkshire, he is having his porridge through a feeding tube and trades jokes with one of his carers.
He is smiling and looks well, when in actual fact - wife Liz points out - he is very poorly.
On the table lies answers to questions sent in advance. The big question is why do it? “Initially because I simply want to leave something behind for the girls (Lilly, seven and Poppy, five) that says their dad was best at something. Then I realised there were more benefits, it’s something I can do, that shows who I am.”
His derring-do flummoxes some people. There has even been suggestions it is a suicide mission.
But Mr Liversidge, who has always been adventurous - skiing from the age of three, grasstracking as a teenager - said: “I can categorically say it is not. I have two life-limiting illnesses and I have survived this long so I’ll be damned if I will let anything else get me.”
The trickiest part has been getting the project off the ground and raising sponsorship, with a lot of firms unsure about getting involved. Even the Motor Neurone Disease Association, who they are raising funds for, was “a bit reticent.”
An imported wheelchair has been re-engineered by Malvern-based firm Indra, who have fitted it with Saietta motors and professional go-kart tyres. To break the record he has to go faster than 55mph.
“It’s joy-stick controlled because he hasn’t enough movement to do it any other way,” says Mrs Liversidge, who is as up for the challenge as her adrenaline junkie husband. “He’s gone as fast as that on a pair of skis. It’s no different and probably safer.”
Jason will get just one try out. “As long as I can have one practice run it’s OK,” he said adding with understatement, “I am quite good at adapting to things.”
They have both had to adapt massively since his devastating double diagnosis. Mrs Liversidge was 20 weeks pregnant with Poppy, when he had the Fabry disease diagnosis in 2012.
Mrs Liversidge said: “We knew at that time it was genetic and both Lilly and our unborn child would have it. They offered me a termination at 20 weeks.
"I said absolutely not. I knew they would lead a relatively normal life although they would have lifelong health problems. We were absolutely devastated and nine months later we were devastated all over again when Jason was diagnosed with MND. I spent the next three days crying, then I went into practical mode.”
The couple have had to battle to get what they need from the NHS - including a double bed which allows them to still snuggle up as a family.
They are still waiting a year after an assessment which said Jason needed full-time care for a night carer.
“At the moment we have Marie Curie coming twice a week from 10pm to 7am so I can get some sleep,” said Mrs Liversidge.
“Sometimes I just don’t have the physical and emotional energy to be writing emails, getting in touch with my MP and making numerous phone calls.”
Despite the terrible toll MND exacts Jason has found positives - the main one spending more time with the girls.
And he says he has come to terms with the disease.
“I concentrate on what I can do, which is still quite a lot. Many factors make me like that, my positive attitude, Liz being so supporting.
"The girls are a massive reason, having fabulous carers is a big part, but a crucial part is a sense of humour and mine is better than ever.”
Jason is trying to raise £5,000 for the Motor Neurone Disease Association. Help him at https://www.justgiving.com/fundraising/gwrelectric
What is MND?
Motor neurone disease affects around 5000 people in the UK.
The incurable condition takes away the ability to talk, walk, eat and breathe.
The late scientist Stephen Hawking was the world’s most famous sufferer, and its longest survivor.