The Prince of Wales called Rob Burrow an inspiration when he surprised him with his CBE, but the former rugby league player said that was never his goal when he set out to raise awareness of motor neurone disease (MND) and that he “just wanted to try and help other people”.
Burrow was diagnosed with the degenerative disease barely two years after ending his stellar playing career but refused to give up the fight and threw himself into a campaign to raise awareness of the condition and help raise funds to find a cure.
The rugby all-time great had many moving moments over his four-and-a-half year campaign, including his former Leeds Rhinos teammate Kevin Sinfield carrying him over the finish line at the inaugural Rob Burrow Leeds Marathon in May 2023, after pushing his great friend for the 26.2 miles.
Burrow made the health announcement aged 37 on December 19 2019, and within a month the former sportsman played the final five minutes of a benefit match at Headingley to an emotional crowd of almost 20,000 people.
By the summer of 2020, he had lost his voice and began to type answers to questions with his eye-gaze machine, which used his voice from old rugby interviews.
In October of that year, a moving BBC documentary aired, Rob Burrow – My Year With MND, in which he declared: “I have too many reasons to live. I’m not giving in until my last breath.”
The film followed his trips to see the specialist and included emotional interviews with his parents, wife Lindsey – his childhood sweetheart – and former team-mates Sinfield and Barrie McDermott.
In the half-hour programme, the former England international said his mind “is so strong and positive” but there was clear evidence that the disease was taking its toll on his body as he struggled for mobility and speech.
Burrow was made an MBE in the 2021 New Year Honours just days after being inducted into the Leeds Hall of Fame.
By January 2021, he had lost the use of his hands and arms and began using a wheelchair after his legs became very weak, but his resolve to never give in grew ever stronger.
In August of the same year, Burrow published his autobiography Too Many Reasons To Live, in which he revealed how crying was banned in the Burrow household and that he managed to maintain his cheery outlook on life despite his constant battle with his terminal illness.
It was a best-seller and won second prize in the William Hill Sports Book of the Year award.
The month after his book was published, Burrow and fellow MND sufferer Stephen Darby, the former Bradford footballer, were part of a group which went to Downing Street to urge the Prime Minister to inject more cash into finding a cure.
It was a bid that eventually proved successful when the Government agreed to make £50 million available for research.
In July 2022, Burrow’s wife, Lindsey, told the PA news agency that her husband continued to inspire his family to live life to the full.
She said: “I think Rob has instilled in us not to give up, to carry on fighting and being brave and to move forward no matter how hard or tough things get.
“There are dark times but we carry on, we try and make the most of life. No matter how tough it gets, you can still turn it into something good.”
Burrow received the Helen Rollason Award at the 2022 BBC Sports Personality of the Year ceremony, where he paid tribute to his “MND hero” and former Scotland rugby union international Doddie Weir, who had died the previous month.
In January 2024, Burrow and Sinfield met William at Headingley, where he surprised them by presenting them with their CBEs for services to MND awareness, which were announced in the 2024 New Year Honours.
At the time, Sinfield had raised more than £15 million since Burrow was diagnosed with the degenerative disease.
William told Burrow: “The most amount of thank yous and congratulations for all the inspirational work you’ve done Rob, you’ve been amazing and everyone’s so proud of you.
“We’ve been following your case and all the money you’ve been raising, and you’re changing people’s lives with MND.”
After being described by the prince as an inspiration to the MND community, Burrow said: “I can honestly say that I never set out to be an inspiration, I just wanted to try and help other people in a similar situation to me.
“I’m just trying to live my best life with the cards that I’ve been dealt.”
He added: “I wouldn’t be here without the love and support of my wife Lindsey. She is stronger than any rugby player I ever played against.”
After being made a CBE, Burrow said: “It is an honour to accept on behalf of the whole MND community. Days like today allow us to keep the spotlight on the disease and continue to raise awareness and, hopefully, funds to fight the disease and support those who are living with MND and their families.”
Burrow’s last public appearance came on May 12 2024 during the second running of the Rob Burrow Leeds Marathon.
Sinfield once again generated vital funds for MND, with Burrow’s wife also completing the half-marathon.
Burrow, born in Pontefract, West Yorkshire, died on Sunday at the age of 41 and is survived by Lindsey and children Macy, Maya and Jackson.