THE last photo of rugby hero Rob Burrow shows him smiling with his family at a MND fundraiser just weeks before his death aged 41.
His former team Leeds Rhinos said he “passed away peacefully” at Pinderfields Hospital in Wakefield, near his home, yesterday surrounded by his family after becoming ill earlier this week.
Burrow was diagnosed with motor neurone disease in 2019, just two years after retiring from a 17-season rugby league career.
After being diagnosed with the illness, he dedicated himself to raising awareness and funds for the MND community with the support of close friend and former Leeds team-mate Kevin Sinfield.
And the Rob Burrow Leeds Marathon and Half Marathon was held in honour of the inspirational star on May 11.
Around 14,000 runners took to the streets and Sinfield was greeted by Burrow at the finish line.
It was here that Burrow was pictured for the last time alongside wife Lindsey, who ran the half marathon, daughters Macy and Maya and Sinfield.
Speaking to the MND Association after the 26.2-mile (42.2km) run, Sinfield said: “This is a true marathon about friendship and spirit, comradery and teamship. I can’t thank people enough.
“The volunteers, people who have helped create this today, every single runner who has put all that hard work in and then those on the streets who have made it such a special day again.”
Sinfield joined the Prince of Wales in paying tribute to a “wonderful friend” following his death.
He said the world had “lost a great man”, adding that his team-mate had been a “beacon of hope and inspiration” since his diagnosis.
The MND Association said Burrow was a “passionate advocate” for people with the “brutal” disease, with Prince William adding that the “legend of rugby league” had a “huge heart”.
In a personally signed message on X, William said: “He taught us, ‘in a world full of adversity, we must dare to dream.’
“Catherine and I send our love to Lindsey, Jackson, Maya and Macy.”
In January, the prince surprised Burrow and Sinfield by making them CBEs during a visit to Headingley Stadium, paying tribute to their “phenomenal” efforts in raising funds for motor neurone disease.
Burrow spearheaded a £6.8million appeal for Leeds Hospitals Charity, where he received care, for a state-of-the-art care centre for people living with motor neurone disease.
Leeds Rhinos said work on Monday to begin building the new Rob Burrow Centre for Motor Neurone Disease will “go ahead as planned at Rob’s request”, adding it was a tribute to his “incredible work”.
Leeds Hospitals Charity said Burrow was “an inspiration, not only to the people of Yorkshire, but the entire nation, and across the world”, adding that he spread joy with his “infectious smile and unwavering sense of humour”.
In a statement posted on X by Leeds Rhinos, Sinfield said: “Today was the day that I hoped would never come.
“The world has lost a great man and a wonderful friend to so so many.
“You fought so bravely until the end and became a beacon of hope and inspiration, not only for the MND (motor neurone disease) community but for all those who saw and heard your story.”
MUSCLE weakness and stiff joints are common symptoms of motor neurone disease.
Other potential indicators of MND, which affects around 5,000 people in the UK, include a loss of muscle mass, or wasting, and movement and mobility problems.
Stiffness is also common, as are cramps, twitches and spasms.
And many people will experience speech and communication issues, breathlessness and changes in saliva.
MND is caused by a problem with cells in the brain and nerves called motor neurones.
These cells gradually stop working over time, but it’s not known why this happens, the NHS says.
He continued in his tribute to Burrow: “I would always say that you were pound for pound the toughest player I ever played alongside, however since your diagnosis, you were the toughest and bravest man I have ever met.
“I will miss you my little mate.”
Burrow spent his entire rugby league career with Leeds Rhinos and helped them win eight Super League titles, and represented Great Britain.
Emotional well-wishers turned up at the club’s Headingley Stadium on Sunday to pay their respects, leaving flowers, shirts and other tributes.
The chief executive of the MND Association said Burrow was “brilliant for the motor neurone disease community” and that he lived with the condition with “dignity, kindness and tenacity”.
Tanya Curry, who has led the charity since January 2023, said: “We are so grateful for everything that Rob and his family did.
“He allowed his diagnosis to come into people’s homes so he could show the impact of this devastating and cruel disease that he lived with since the end of 2019 with such dignity, kindness and tenacity.
“Whenever you met Rob, you couldn’t help but smile and have a great conversation with him and he will be missed by so many.”
Ms Curry said Burrow, a patron of the MND Association, was “immensely brave” to share his diagnosis and “allowed people to have hope”.
By Grace Macaskill
Courageous rugby legend Rob Burrow has died of motor neurone disease.
The 41-year-old went from one of the fiercest rugby players in Britain to being confined to a wheelchair barely able to move after his diagnosis in December 2019.
Leeds Rhino player Rob, who was capped 15 times for England and five for Great Britain, leaves behind wife Lindsey and children Macy, Maya, and Jackson.
The couple were teenage sweethearts and Rob once said: “There’s something beautiful about being cared for by the only girl you’ve ever loved.”
Images of Rob being carried across the finishing line of the Leeds Marathon by fellow player Kevin Sinfield went all around the world in May 2023 – and became an enduring symbol of hope for MND sufferers.
Kevin raised more than £7million for motor neurone charities after his friend was diagnosed and pushed Rob’s specially adapted chair around the 26.2 mile race before picking him up so they could finish together.
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.”
Rob, given an MBE in 2021, was one of Britain’s smallest rugby players but behind his diminutive stature lay the heart of a lion.
He refused to give in to MND which leaves sufferers trapped in their own bodies, their minds as sharp as ever as their movement and speech fails.
The dad-of-three – who talked through a computer like the late physicist Stephen Hawking, who also had MND – was determined to raise awareness of the condition.
After doctors predicted he would die within a year, Rob said he was inspired to live by fellow sufferer, Scottish rugby union player Doddie Weir.
Before he lost his voice, Rob said: “Dodi is so inspiring. He’s approaching it the way I want to go, to live a normal life as much as I can.
“He’S happy, really positive and I want to be like that.
“Whatever I can do to raise awareness, I’m more than happy.”
Dodi sadly died aged 52 in November 2022.
Undeterred, Rob and Lindsey, carried on raising awareness for the disease through interviews and fundraising.
Supporters began a £5million fundraising drive for a new MND centre bearing Rob’s name in Leeds.
His family refused to give up the fight to keep Rob alive with dad Geoff managing to get his son on a trial drug to slow down the progressive of the disease.
Rob was diagnosed with the cruel condition after an old rugby injury flared up.
He told 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.”
He said his first instinct on being told he would die was to check that Lindsey was okay.
“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.”
The couple were then faced with telling their three children.
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. I wanted them to know, you know?”
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.”
Wife Lindsey told the Sun in May 2023 how the family had a “no tears” approach to the disease, saying: “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, who won eight Grand finals with Leeds Rhinos as they dominated rugby league in the 2000s, started recording his voice so his children could still hear him through a computer when it disappeared.
By October 2020, his dulcet Yorkshire tones could be heard through technology which Rob used his eyes to control.
As his condition worsened, the player had to permanently use a wheelchair.
Unable to walk or talk, reliant on physiotherapist Lindsey and his parents Geoff and Irene, to feed and wash him.
But Rob never lost the sparkle in his eyes which appeared to constantly shine and said more about his indomitable spirit than anything else.
He said he dreaded the day he would leave his family behind – but was not afraid to die.
Rob said: “There are times when I think about death, but I’m not afraid of dying.
“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.”
Rob, of Pontefract, Yorks, was often the Leeds Rhinos scrum-half or hooker and played 493 times, winning eight super league championships, two challenge cups and was named in the super league dream team three times.
Yet standing at 5ft 5 and weighing 10 stone, 5lb, he was known as the ‘smallest player in the super league’.
He showed the same determination in his fight to raise awareness of MND.
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.”
