Before MND I was rugby ace – being carried over marathon line by my mate was like scoring in cup final, says Rob Burrow

It’s a loving image that has touched the hearts of the nation – rugby star Kevin Sinfield carrying his pal and former team-mate Rob Burrow across the finish line at the Leeds Marathon, a testament to an extraordinary friendship.

And today, Rob, who suffers from motor neuron disease, shares the light-hearted words of his faithful pal as they completed the grueling 26.2 mile race together.

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Rob, 40, says: “Kevin whispered, ‘You’re not going to hit me Rob, we’re going to finish together’.” Then he gave me a kiss on the cheek.”

The father-of-three, who talks through a computer like the late physicist Stephen Hawking, who also suffered from a mental disorder, adds: “It was a day in a million.” It felt like being in a big one again final score.”

Former Leeds Rhinos, England and Great Britain rugby league star Rob was given a year to live after being diagnosed in December 2019.

Not only has he overcome the grim prognosis, but he’s also made it his mission to raise awareness about the horrific disease – which leaves sufferers trapped in their own bodies as their minds are as sharp as ever, their movement and language are failing – and has helped launch a new £6.8million campaign for a state-of-the-art MND centre.

Last weekend’s inaugural Rob Burrows Leeds Marathon boosted the fund by £825,000.

Rob was pushed around the course in his customized chair before, in emotional scenes, Kevin, 42, lifted him out to carry him across the finish line.

Rob says: “It felt fantastic to be part of a team again, with my mate Kevin as the captain.

“Kevin joked that he didn’t want me to beat him by crossing the finish line first (in my chair). I think he knew I had a cunning plan to claim I finished before him.

“Politics Without Tears”

“I want him to know that I plan on beating him next year.”

As we meet up at Rob’s home in Yorkshire, he’s beaming with joy as his wife, Lindsey, tells us about that poignant marathon moment.

He says: “It’s such an iconic image. We’ve had messages from people around the world telling us how moved they were by what Kev has done.”

Confined to his wheelchair, Rob cannot move or speak, and depends on Lindsey and his parents Geoff and Irene to dress and feed him.

He had hoped to “talk” to me via a special machine that uses Rob’s eye movements to pick out words he had recorded before he became ill.

On the day I visit him, his frustration is evident as the machine only works intermittently. But his beaming smile remains and you can see the beaming character in his eyes as the family talks about Rob the ‘Joker’ who at 1.70m was one of Britain’s shortest professional rugby players of all time.

Lindsey, who also ran the marathon for the charity, says Rob shows the same resilience off the field as he does on it.

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She reveals he has a “tear politics” about his illness, having been inspired by Scottish rugby union legend Doddie Weir, who lived with MND for five years before dying aged 52 last year .

Lindsey, 40, also tells how the couple faced the heartbreaking prospect of telling their children Macy, 11, Maya, eight, and four-year-old Jackson about Rob’s illness.

She says: “We told them that the doctors and nurses were doing everything they could to help dad, but that he had a neuropsychiatric disorder and it was life-limiting.”

The couple, teenage sweethearts who began dating when they were 14, have also had to wait agonizingly to find out if Rob’s illness was caused by a faulty gene that could transmit the disease to their children. Luckily, he was free of the gene, which less than five percent of MND patients carry.

Despite studies showing rugby players may be at higher risk for neurological disorders, Rob and Lindsey attribute his illness to ‘just bad luck’.

The couple, who wed in 2006, appeared to be living a perfect life before Rob’s diagnosis.

They had just moved to a beautiful new home in Pontefract, West Yorks, after Rob retired from the field and took up a role as head coach at Leeds Rhinos Academy.

Friends noticed that Rob’s speech had become slurred, which the family initially put down to strong painkillers he was taking for an old rugby injury. But then he began to have trouble pronouncing words.

When pal Kevin noticed Rob struggling to say ‘consistency’ at a rugby presentation, the Rhinos sent him to the club doctor. Three weeks later, the family received the devastating diagnosis.

Lindsey says: “By the time Rob was physically fine, still coaching rugby, picking up the kids from school, driving and living a normal life. It was mainly his speech.

“And he was strong. Pound for pound he was the strongest player on the team.”

When Rob started ‘voice banking’ – recording his words so he could ‘talk’ to the device later – Kev took him to see Doddie Weir.

Lindsey says: “Rob handled the diagnosis quite well. The first thing he said upon his appointment was, “I’m glad it’s me and not you or the kids.” Within the first few weeks, Kev took Rob to meet Doddie and that was a turning point.

“Doddie gave Rob hope by telling him, ‘Despite what they tell you, fight it and move on.’

“Rob came home and said to me, ‘Okay, there’s a no-tears policy, we’ll take care of that.’ It is what it is and we make sure things stay as normal as possible for the kids and make good memories. Rob said he would accept the diagnosis but fight the prognosis.”

The couple made the decision to tell their children within days of receiving the news. Lindsey says: “It was really a difficult thing.

“Back then, Jackson was just one. Maya was about four years old and she said, “Why are you telling us this?” “It’s really boring,” and he started playing again.

“Macy didn’t say much at the time, but later that day he went to a party and came back and said, ‘Does that mean Dad is going to die?’ We told her it would shorten his life but everyone did what they could to help Rob.”

Lindsey, an NHS physiotherapist, says the fact that Rob has been such a hands-on father made her situation even more distressing.

She adds, “When they were little, he would take them to mom groups, playgroups, and the park. He absolutely adores his children.

“And that’s the hard part about having it taken from him. Imagine if you couldn’t read your kids a bedtime story or take them swimming or to the park.”

Lindsey says Rob’s physical health, as well as his language skills, only began to deteriorate three months after diagnosis, when the UK first went into lockdown.

She recalls: “He became quite unsteady on his feet. He suffered several falls and began using a walker around the house over the summer. The disease spread so quickly.”

By October 2020, Rob had lost his voice. Today he is practically unable to move as the cruel condition is taking hold.

Lindsey says, “The amazing thing about Rob is that he never complains.

“I don’t know how he does it. He was always a joker, a bit of a joker, who liked to talk to the boys at rugby. They all come to him all the time, which he loves, but sometimes the conversation has already moved on by the time he’s entered the answers into his device.

“But he never really moans, honestly. I can only attribute it to the mental toughness he developed in rugby.

“He was always such a happy person, even when he got up at 6am for training when most people were grumpy, and that hasn’t changed. He’s always smiling.”

Rob is in two drug trials that his family says have extended his life.

But Lindsey knows that one day she may face a future without her first and only love – something the couple doesn’t talk about.

She says: “I try not to think about the future because I can’t imagine a future without Rob. I might deny it a bit, but I think you just have to take each day as it comes.

“Rob doesn’t like to talk about it either and I have to respect his wishes because he’s the one living with this disease, the one going through it.

“As a family, we don’t want self-pity, we don’t ask, ‘Why us?’ It is what it is.

“Rob doesn’t carry a faulty gene that can play a role in MND, which was a relief, so it’s just bad luck.

“None of us thought we would go down this path.

“When Rob retired we had the notion of being together until we got old and being diagnosed was devastating but we can’t go into detail.

“I think the positivity comes from Rob. It is the tower of strength for the whole family. Motor neuron disease has taken a lot out of us, but we have to deal with the cards that have been thrown at us.

“I’m just grateful for every day that Rob is here.

“He’s still the same person I married all those years ago, just in a body that doesn’t work.”

Lindsey says Rob is a shy, private person by nature but has been campaigning to raise awareness of the disease – and to raise money for the new center in Leeds.

His pal Kev has been campaigning for MND charities since his friend’s diagnosis, raising £8million.

Now the whole world knows how strong that bond really is.

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