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‘Not being able to watch my kids grow up is the hardest thing’: Rob Burrow on his MND diagnosis

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‘Not being able to watch my kids grow up is the hardest thing’: Leeds Rhinos legend and father of three Rob Burrow is terminally ill with motor neurone disease at just 37… despite the heartache, he is determined to make the most of his time

  • Rob Burrow was diagnosed with motor neurone disease before Christmas  
  • The former Leeds Rhinos and Great Britain scrum-half has spoken to Sportsmail 
  • He has spoken to other sport stars who have the disease, such as Doddie Weir  
  • Burrow has already set up a fund to aid research, raising £225,000 so far

‘The other day, when I was putting my daughter Macy to bed, she said, “Are you all right Daddy?”. I was like, “I am fine, why?” And she said, “But there’s no solution.”

‘I’m not bothered about dying, I’m not scared of dying, but to not be able to watch my children grow up is the hardest thing.’

Rob Burrow thought he had a viral infection when he arrived for his hospital appointment in Leeds last month. ‘I was expecting to go and get medication and get on with life,’ he says.

Former Leeds star Rob Burrow has opened up on being diagnosed with motor neurone disease

‘I was quite relaxed in the waiting room, drinking coffee, in good spirits… and then I was told.

‘At first, I was like, “Did I hear that right? Are you sure? I feel great”. It was a numb moment. I was in shock. That was the hardest thing, having not expected to be told anything like that.

‘Nobody can ever prepare you for being told you’ve got something where there’s no cure.’

Leeds Rhinos legend Burrow is 37. The incurable illness he was diagnosed with is motor neurone disease (MND), a degenerative condition which affects how nerves in the brain and spinal cord work.

The 37-year-old spoke to Sportsmail at Headingley — the home of Leeds Rhinos

The 37-year-old spoke to Sportsmail at Headingley — the home of Leeds Rhinos

The scrum-half spent his entire career with the Yorkshire outfit, from 2001 until his retirement

The scrum-half spent his entire career with the Yorkshire outfit, from 2001 until his retirement

Burrow believes the first warning sign was there last September, when his former captain Kevin Sinfield approached him at the Rhinos’ end-of-season awards night. ‘I was giving the Academy Player of the Year award and I got up on stage and the word I struggled with was ‘consistency’.

‘Kev came up and said, “Are you all right? Have you been drinking?” I said, “No, what are you on about?” I hadn’t even realised at the time that I’d slurred the word.’

It was a similar story two months later when Burrow was moving house. ‘The word I couldn’t say then was ‘solicitor’. That’s when I thought something was up, but I thought it might just be stress or anxiety from moving, or the long-term use of painkillers for my shoulder injury.’

Burrow retired from playing in 2017 and is now coaching the Rhinos’ reserves. He began to do his own research and read about MND. But after the club took him to hospital for testing, the eight-time Super League winner was told by his doctor to ignore his self-diagnosis.

‘The doctor said, “Why are you saying that? We are not testing for that”. They thought I might have something called myasthenia gravis, which can be treated. Then I got my MRI scan back, which was fine, so I thought I was home and dry. I thought it might be something like an infection.’

While part of the team he won eight Super League titles and two Challenge Cups

While part of the team he won eight Super League titles and two Challenge Cups

Burrow’s shock at being diagnosed with MND was hardly helped by the lack of information he and his wife Lindsey received.

‘Lindsey is a physio, so she has a medical background and she asked questions but they had no answers,’ he says. ‘They didn’t know what type of MND it was, how long I would have, why I had got it. We were like, “You’ve just told us that but you can’t give us anything else?” That first week was hard and emotional.’

Burrow has more answers now after visiting Professor Christopher McDermott, a specialist neurologist, in Sheffield this week. ‘It was just what we needed,’ Burrow says, his relief obvious. ‘He even told me about death, that it’s peaceful most of the time, not that I’m thinking about that.

‘I’m in the early stages, which is good, and the early life span is three years. But he says that I am not to look at that stat because I’m young and healthy, and most of the stats are based on people who are 60-plus.

‘Obviously, the outcome is the same, but it was great news that I am not going anywhere, any time soon. I’m hopefully going to be the one that lives 10 years-plus. Hopefully I can get on to some medical trials and prolong my life. Stephen Hawking lived for 30-odd years with it, hopefully I can be one of those stats. If I was a cabbage, so to speak, I think I would know that I am closing down. But I just feel like I am going to be here a while. My mind is so positive.’

Burrow admits the most difficult thing is coping with idea of not seeing his kids grow up

Burrow admits the most difficult thing is coping with idea of not seeing his kids grow up 

Burrow also played 15 times for England and picked up five Great Britain caps during his career

Burrow also played 15 times for England and picked up five Great Britain caps during his career

That positivity is evident throughout the hour that Burrow, at 5ft 5in tall and 10st, the smallest player in Super League history, sits in a hospitality box overlooking the pitch at his old Headingley home.

He jokes about how his slurred speech might make his interview difficult to transcribe. It is typical of Burrow that he is able to laugh, even at his lowest point in the days after his diagnosis.

Just before Christmas, he and Lindsey gathered their three children — Macy, eight, Maya, four, and one-year-old Jackson — at home to tell them the news. ‘The kids were running around and we had to say, “Sit down, we want to tell you something”.

‘We told them loosely, “Daddy is poorly”. We didn’t name what it was, apart from saying there’s no cure.

‘And Maya just said, “What are you telling us that for? That’s boring”. That was just perfect. I thought telling them would be the hardest thing to do, but when Maya said that, it lightened the mood.’

Macy, however, is more aware of the seriousness of the situation. And talking about the prospect of leaving behind his children is when Burrow begins to get emotional.

Burrow salutes the crowd at Headingley alongside daughters Macy (left) and Maya (right)

Burrow salutes the crowd at Headingley alongside daughters Macy (left) and Maya (right)

‘There is no cure, as we know, but to live longer and see my kids grow up is the ultimate goal,’ he says. ‘Who knows, in eight years, they might find a cure. And if I play a part in awareness down the line after I’ve gone, I can be happy.’

Burrow’s eyes widen as he stares out on to the Headingley pitch and casts his mind back eight years. ‘The one game that stands out for me is the World Club Challenge in 2012, here against Manly.

‘It was absolutely jam-packed. There was not an empty seat. The atmosphere was like no other. We won and became World Club champions that night. Great occasion, great win, great performance.’

THAT memorable evening, however, could well be eclipsed on Sunday when Burrow puts his boots on for the Rhinos in a special pre-season friendly against Bradford Bulls.

The match was organised as a testimonial for Jamie Jones-Buchanan but it is now also raising money for Burrow’s MND fund. Headingley has been sold out for the clash, which is being broadcast live on Sky Sports and has other ex-Rhinos, including Sinfield, Jamie Peacock and Danny McGuire, taking part.

‘I am not going to be in my best form,’ Burrow laughs. ‘But I will certainly enjoy the occasion. It is going to be one of my most special moments. To think that you will never play again and then to walk out in front of the crowd will be unbelievable.

‘I’ve got my children coming out with me as well. The fact that Jackson at least gets to sample it for the first time is great.’

Since Burrow went public with his illness, the fund set up in his name has raised £225,000 from more than 9,500 donors.

‘I am trying to think of a new word other than ‘overwhelmed’ and ‘humbled’. I can’t describe how nice it is to read the comments that people are putting on the page, about me as a player but more so about me as a person.’

Sporting greats from all over the world have come out in support of one of rugby league’s most popular players, including ex-England striker Wayne Rooney, who is a Rhinos fan and posted a video and exchanged messages on Twitter.

Burrow has already met Doddie Weir, the Scotland rugby union great who was diagnosed with MND in 2017, and another sufferer, 31-year-old Stephen Darby the former Liverpool defender, has also been in touch.

Burrow has spoken to former Scotland forward Doddie Weir, who also suffers from the disease

Burrow has spoken to former Scotland forward Doddie Weir, who also suffers from the disease

Questions are beginning to be asked about whether sportspeople are more likely to develop the condition. ‘It’s very complex and they are still working that out,’ Burrow says. ‘But the younger people that get it are often sportspeople or past sportspeople, so there must be a link there.’

Burrow says he feels physically fine other than a flickering in his biceps, and he plans to carry on coaching for as long as he can and does not want his young players treading on eggshells around him.

‘They still don’t want to say too much to me, but I love jokes, so if they want to take the mick out of my voice, I’m cool with that.’

And it is with another joke that Burrow finishes, as the former scrum-half compares his fight with MND to a famous scrap he had in his playing days, when he took on Hull KR’s Tongan Epalahame Lauaki, who is 6ft 3in.

‘While this is big and I might not be able to fight, I’ll certainly be swinging,’ Burrow says. ‘I was quite often told I was too small to play rugby, but I always liked the adversity and to prove people wrong. Every week I was doing stuff other people weren’t doing because I had to.

‘I see this now as the same. I want to live longer than the stats suggest. I am ready for a battle. This game might be one too far, but I’m going to come out swinging.’

To donate to a fund set up to help Rob Burrow and his family, visit www.virginmoneygiving.com/fund/robburrow

Burrow is now fundraising and since going public with his diagnosis has raised £225,000

Burrow is now fundraising and since going public with his diagnosis has raised £225,000

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