HEART OF A LION
How rugby league great Rob Burrow tackled MND head on to raise £20m with loyal wife Lindsey by his side
Rob's plight and charity work is bringing hope to others
ROB BURROW once said: “There’s something beautiful about being cared for by the only girl you’ve ever loved.”
It was typical of the way the rugby league legend tackled motor neurone disease, which turned him from one of the fiercest rugby league players in Britain to being confined to a wheelchair barely able to move.
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Rob, who has died aged 41, leaves behind wife Lindsey — his teenage sweetheart — and their children Macy, 11, Maya, eight, and four-year-old Jackson.
The sportsman had a stellar 17-season career at Leeds Rhinos as well as being capped 15 times for England and five for Great Britain.
In 2019, two years after retiring, he was diagnosed with MND and told he only had two years to live.
He selflessly threw himself into raising awareness of the disease and fundraising for MND charities — helping to raise around £20million with his best pal and former team-mate Kevin Sinfield, 43.
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Lindsey said: “This is so people no longer have to explain. And it is about giving hope to families who have little. You are given bleak statistics, we want to bring change.”
Images of Rob being carried across the finishing line of the Leeds Marathon by his mate Kevin went all around the world in May 2023 and became an enduring symbol of hope.
The friends met at a Rhinos squad session when Kevin was 14 and Rob was 12.
Kevin pushed Rob’s specially adapted chair around the 26.2-mile course before picking him up so they could finish together.
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Rob later told The Sun: “Kevin whispered, ‘You’re not going to beat me Rob, we are finishing together. He then kissed me on the cheek.
“It was a day in a million. It felt like scoring in a Grand Final again.”
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‘I’m glad I have the disease and not Lindsey’
Rob was awarded an MBE in 2022 and he and Kevin received CBEs from Prince William this year for their efforts in raising funds and awareness of the disease.
At 5ft 5in, Rob, often called “the smallest player in Super League” worried about his size when he began playing rugby but soon realised it was his advantage.
He said: “I was wondering how I could cope with being small but it was my size which would be my greatest adversary.
“I quickly learnt that I had to do it my way and differently to others. I knew that to be the strongest pound for pound I would need to be the quickest in the team.”
Mum Irene, 73, told The Sun last year: “He might have been small but nobody could catch him.”
After an old rugby injury flared up, Rob was diagnosed with the cruel condition that leaves sufferers trapped in their bodies while their minds are as sharp as ever and their movement and speech fails.
He told the BBC: “My speech was slurred, with family telling me it had got worse. I had an old injury and went for a (painkiller) jab in my shoulder. I mentioned about the speech to the doctor and was very quickly diagnosed.
“I didn’t know much about MND at all. I’d read up on the internet about the symptoms . . . but I didn’t believe (I had) it. When I found out it was a massive shock.”
His first instinct on being told he would die was to check that Lindsey was OK.
“Most husbands would feel that,” he said. “It was tough on her. I thought, ‘I’m glad I have this disease and not her’.
“MND is not the worst thing in the world, your kids getting poorly is the worst thing.
“I’m not trying to portray myself as a hero because any man would gladly take any pain from their wife and kids and give it to himself.”
His family refused to give up hope, with his dad Geoff managing to get his son on a trial drug to slow down the progression of the disease.
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It kept Rob alive longer than the couple of years he had been told he could expect in 2019.
Geoff said: “Sufferers have waited over 25 years for a breakthrough.
“With all the support we’ve had we’ve been able to get Rob on trial treatments.
“That’s the reason why Rob and the family are raising awareness — it’s for all the people sat quietly at home, going through what we’re all going through.”
Of the difficult task the couple faced of telling their three children about his disease, Rob said: “It’s not easy. How do you tell them you’ve got something when there’s no cure? Lindsey was a great help. We wanted to tell them before Christmas because we thought that would be a distraction.”
Lindsey later spoke of the children’s acceptance, saying: “We told them that the doctors and nurses were doing everything they could for Daddy but that he had MND and it was life-limiting.
“Maya said, ‘Why are you telling us this? It’s boring’. We all started laughing.”
Lindsey told The Sun last year how the family had a “no tears” approach to the disease, and explained how Rob had been inspired to live by another MND sufferer, rugby union player Doddie Weir who died aged 52 in 2022, six years after his diagnosis.
Lindsey said: “Within the first couple of weeks of diagnosis, Kev Sinfield took Rob to meet Doddie, and that was the turning point.
Doddie instilled hope into Rob, telling him, ‘Despite what they tell you, fight this and carry on with life’.
“Rob came home and told me, ‘Right, there’s a no-tears policy, we deal with this.
“It is what it is and we keep things as normal and possible for the children and make happy memories.
“Rob said he would accept the diagnosis but fight the prognosis.”
Two months later Rob started recording his voice so his children could still hear him through a computer when it disappeared.
By October 2020 his Yorkshire tones could only be heard through technology controlled by Rob’s eyes.
As his condition worsened the player had to permanently use a wheelchair and became reliant on Lindsey and his parents to feed and wash him.
But Rob never lost the sparkle in his eyes, which said more about his indomitable spirit.
Despite saying he dreaded the day he would leave his family behind, he was not afraid to die.
Rob said: “There are times when I think about death but I’m not afraid of dying.
‘Inspired by you, many will dare to dream’
“The most frustrating thing is not being a proper dad.
“I know I am their daddy but, when it’s not on your terms, it is horrible.”
But his plight and charity work is bringing much hope for others, including a new research and treatment centre, the Rob Burrow Centre for MND, which hopes to open next year in Leeds.
It will be the first to have its design led by the holistic needs of the patient and their family.
The chief executive of Leeds Hospitals Charity, of which Rob was a supporter, said he was “an inspiration, not only to the people of Yorkshire, but the entire nation”.
Esther Wakeman added: “Rob, and his family, bravely shared his personal story with us all and showed us how to live life to the fullest in the face of adversity.
“Even when his own voice failed him, he gave a voice to the entire MND community, giving people hope and spreading joy with his infectious smile and unwavering sense of humour. Thanks to Rob’s dedication and support, we have now raised £5.8million to help bring Rob’s dream to life, a specialist centre for people living with MND and their families.”
Rob, of Pontefract, West Yorks, who grew up with sisters Jo, 49, and Claire, 44, was named in the super league dream team three times.
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Prime Minister Rishi Sunak summed up Britain’s affection for Rob in March 2023, when he was given a special 2000 Points of Light award for his work.
Rishi said: “The legacy of everything you are doing for the fight against this disease will change what it means to be diagnosed with MND.
“As you have said, ‘In a world of adversity, we must dare to dream’.
“Inspired by you, many will dare to dream and fulfil those dreams, in spite of whatever adversity they may face.”
Last night Prince William posted on X/Twitter that Rob was a “legend of Rugby League” and “had a huge heart”.
His former rugby club said: “He never allowed others to define what he could achieve and believed in his own ability to do more.
“For those who knew Rob . . . his determination and spirit in the face of MND over the last four and a half years came as no surprise.
“Rob never accepted that he couldn’t do something. He just found his way of doing it better than anyone else. He will continue to inspire us all every day.”
Rob lived his final months unable to move or talk unless through his machine.
Yet his positivity always shone through. He once said about his attitude: “I don’t know how I became so positive and smiling all the time.
“I definitely think it is something I have dealt with in my life previously.
“I have a wonderful family who can’t do enough for me, especially my wife and kids.
“My mum still pampers me when I go up and my dad is the most positive person I have met.
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“I use positive imagery a lot, like walking my girls down the aisle. I often see me and Lindsey going to the villa for 90 days when she retires from her job. The brain is really powerful and I believe I can get to that stage.”
Rob may have not fulfilled his dream but his legacy lives on through the incredible fundraising he and Kevin achieved — and the love of everyone who knew him.
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