Inspired by his daughters, now Lee Newton's L6ve Life motor neurone disease campaign backed by world of rugby league

IT WAS while on holiday in the Maldives, surrounded by his family, that Lee Newton realised he had to fight.

Father of two Mr Newton, 43, is only too aware the odds are stacked heavily against him.

"Five people die a day in the UK from motor neurone disease," he says matter of factly at the smart home in Anlaby he shares with wife Caroline, 42, and daughters Hannah, 13, and Evie, ten.

It is the same illness physicist Stephen Hawking, 72, has suffered from since the age of 21.

Dr Thekkootu Pisharam Nandakumar, the neurologist treating Mr Newton at Hull Royal Infirmary, concedes the medical world is "far away" from discovering a cure for the condition.

But Mr Newton is not a man resigned to his fate – the former Skirlaugh ARLFC stand-off has only survival, his family, friends and business on his mind.

There is no time for dark thoughts in this household.

"I was snorkeling with whale sharks last year in the Maldives with the girls and I thought, 'I've got to beat this'," he says.

"I remember looking at the smiles on the girls' faces and thinking, 'That's my inspiration'."

Fair-haired Evie is sitting, eating an apple, on a chair next to her parents.

"We all muck in don't we, Evie?" says Mrs Newton.

Evie smiles and nods in agreement.

"That's right, we pick him up and then we drop him, don't we?"

Evie giggles.

"The girls sometimes help Lee get up," says Mrs Newton, sharing the family's joke.

"One day Evie let go of him and he fell flat on his face.

"Luckily, because of all the years he spent playing rugby league, he knows how to fall without hurting himself too much."

It is a light-hearted story that, for a fleeting moment, takes the sting out of this cruel condition.

Mr Newton was diagnosed on March 20 last year.

He is using his ordeal to raise awareness about the condition, as well as vital funds for the Motor Neurone Disease Association.

His friends, Carl Wiles, Rob Moulds, Gary Hobson and Shaun Boanas helped him launch the L6ve Life Foundation, so-called because of Mr Newton's love for life.

So far, more than £8,000 has been raised; much of it from the sale of L6ve Life T-shirts.

"Men being men, they like to try and out-do each other and get famous people to pose with the T-shirts," says Mrs Newton.

"The T-shirts have been all over the world."

Mr Newton should be enjoying excellent health, reaping the benefits of his hard work.

He seemed a doctor's dream.

"I was going to the gym five times a week," he says. "In December 2012, I started to feel a bit of weakness in my right hand during a bench press.

"A few weeks later I was doing a 30-day intensive fitness programme. I was 25 days in and I was doing a dip when I fell into some weights.

"I just couldn't hold myself."

Mr Newton, who barely took a paracetamol prior to his diagnosis, reluctantly visited a physiotherapist.

"That was on a Monday," he says. "On the Wednesday I visited the doctor and on the Saturday I was seeing a specialist.

"As you can tell, it all happened very fast. I had a load of tests done and then I was diagnosed with having motor neurone disease."

Mr Newton and his wife have kept their daughters informed, as best they can, about his condition.

"We sat the girls down and told them that I have a condition that affects my muscles," he says. "We answer the questions when they are asked."

Caroline says: "Evie asked Lee once, 'Will it stop you walking?'

"He replied that he didn't know yet and Evie's next question was, 'What's for pudding?'"

For the children's sake, the Newtons are trying to keep family life as normal as possible.

But the time has now come when Mr Newton has difficulty walking more than a few steps unaided.

"He was reluctant to use a wheelchair at first," says Mrs Newton.

"But it means he can get out and about and even get onto a rugby field to see his friends at Skirlaugh."

Mr Newton, who has come to recognise the need to pick his battles wisely, nods in agreement.

"It took some accepting," he says. "But the wheelchair is there to make my life easier, so why not use it?

"I have an electric scooter at work, which I use to whizz around the factory.

"It means I can still work."

Mr Newton looks at his wife.

"Caroline is my absolute rock," he says, showing his work, although a huge part of his life, takes second place to his doting family.

He searches for another sentence to re-enforce his statement.

"You don't have to say any more than that," says his wife. "We are one big team here."

On Thursday night, the Newton family visited the KC Stadium for to watch the 18-18 draw with Castleford.

Sky TV cameras picked out the Newtons sitting in the crowd as the players emerged from the tunnel for their pre-match warm-up wearing L6ve Life T-shirts.

"It was a very emotional and humbling moment," he says.

"I am very fortunate that I have all these people supporting me.

"For me, it's all about continuing to love life, trying to stop myself getting worse and doing my bit to help find a cure."

• To donate, order a T-shirt, or to get involved in L6ve Life fundraising activities, visit l6velife.co.uk

DR THEKKOOTU Pisharam Nandakumar, neurologist at Hull Royal Infirmary, is a member of the L6ve Life Foundation.

He said: "Lee Newton is a very pleasant and enthusiastic chap.

"He is a very hardworking person and is doing well.

"Unfortunately, we are still far, far away from finding a cure for motor neurone disease.

"Mr Newton is doing an extremely good job with the L6ve Life Foundation.

"We need more people like him and I have all the praise in the world for him."

MOTOR neurone disease is the name for a rare condition where parts of the nervous system become damaged, according to the NHS website.

This causes progressive weakness, usually with muscle wasting.

It occurs in about six in 100,000 people.

Motor neurone disease occurs when specialist nerve cells in the brain and spinal cord, called motor neurones, stop working properly.

Motor neurones control important muscle activity, such as gripping, walking, speaking, swallowing and breathing.

As the condition progresses, people with motor neurone disease will find these activities increasingly difficult – and eventually impossible – to do.

Exactly what causes motor neurones to stop working properly is unclear.

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