Defiant motor neurone disease campaigner Rob Burrow ‘did not want sympathy’ as his condition deteriorated and vowed to stay positive until the very end because he had ‘too many reasons to live’

Motor neurone disease campaigner Rob Burrow didn’t want people to ‘feel sorry’ for him as his condition worsened and vowed to stay positive until the very end.

It was announced yesterday that the brave former rugby star passed away at Pinderfields Hospital near his home surrounded by his family after becoming ill earlier in the week.

The player was diagnosed with the disease in 2019, just two years after retiring from a 17-season league career.

In an unearthed interview with BBC Breakfast four years ago, defiant Burrow vowed to keep fighting for as long as he could.   

He said: ‘I’m not giving in, not until my last breath. There are too many reasons to live.

‘I promised my wife I would be honest throughout this process. Men keep things to themselves, too proud to ask for help, but obviously throughout the process I need help.’

He said he wanted to record his voice as much as he could for the sake of his children, so they could remember what he sounded like.

He said: ‘I’m keen to record my voice. Unfortunately I can’t really speak – this is nothing like what my voice was. I do lots of interview and audio. I can tell the kids off – I still do that.

‘From my voice, I think that’s important for them.’

Speaking about his determination to stay upbeat, he said: ‘I was diagnosed in three weeks, so I consider myself really lucky.

‘The path I needed to go down was positivity. It’s humour. I’m a guy who likes banter, so I’m continuing that.

‘The main thing for me is normality. I don’t want people feeling sorry for me.’

It follows an outpouring of heart-wrenching tributes for the ‘hero’ who ‘never allowed others to define what he could achieve’.

Famous figures such as the Prince of Wales, Dan Walker, Chris Kamara, Rishi Sunak and Keir Starmer all paid tribute to the brave campaigner.

Burrow, a fan favourite, won eight Super League titles with Leeds but after being diagnosed with the illness, he dedicated himself to raising awareness and funds for the MND community.

He did so with the support of former Leeds teammate Kevin Sinfield.

A statement on behalf of his family last night said he continues to ‘inspire us all every day,’ adding that ‘in a world full of adversity, we must dare to dream.’

Paying tribute, the MND Association said: ‘Our thoughts today are with Rob’s wife Lindsey, children Macy, Maya and Jackson, family and friends and the rugby community.

‘Rob, who played at number 7 for Leeds Rhinos, lived with this brutal disease in the public eye after choosing to announce his diagnosis shortly before Christmas 2019.’

The charity called the rugby star a ‘consistent and passionate advocate’ in the touching statement.

Burrow’s bereft wife said her husband had urged her to search for love again when he died – but she refused because no one compares, MailOnline reported previously. 

Lindsey had promised her former rugby league star husband before he died that her only focus would be caring for and protecting their three young children Macy, Maya and Jackson.

He had always begged her to ‘find someone else’ when he died – but Lindsey, a NHS physiotherapist and his full time carer who met him when they were both 15, refused.

She cried as she told the BBC in 2022: ‘He always says, “find someone else. You’re young”. But there won’t be anybody else. No one can take Rob’s place’.

Lindsey also said that they had discussed his death, and final wishes.

She said: ‘Rob doesn’t like to talk about the future. It’s really difficult because you don’t want to upset him but I want to know Rob’s wishes so we have had to have those difficult conversations. I know what Rob wants but I try not to think about the end because I can’t imagine a world without Rob’.

She said her husband’s life and battle with motor neurone disease shows that ‘we must dare to dream’ as she and their young family mourn his death. 

And incredibly, and poignantly, work to build a new £6 million Rob Burrow Centre for Motor Neurone Disease in Leeds begins today – part of his extraordinary legacy – less than 24 hours after his death.

A GoFundMe set up in his honour has reached an incredible £133,116 in donations – with the top being a generous £4,823.

The team fundraiser paid tribute to the ‘fearless and respected’ player who was a ‘tough competitor on the field’ and ‘gave his all for the team’.

A statement posted on behalf of his family read: ‘It is with deep sadness that we announce the death of our beloved son, husband, father, brother and friend.

‘Rob has always been a true inspiration throughout his life, whether that was on the Rugby league field or during his battle with MND.

‘He never allowed others to define what he could achieve and believed in his own ability to do more.

‘The outpouring of love and support that Rob and the whole Burrow family have received over the last four and a half years meant so much to Rob.

‘In particular, the Rugby League Family and the MND community have rallied around Rob to inspire him, thank you for your support.’

They concluded the touching tribute by saying: ‘He will continue to inspire us all every day. In a world full of adversity, we must dare to dream.’

The Leeds Rhinos expressed their ‘deep sadness’ at the news for their brave former team mate.

The rugby legend spent his entire club career with Leeds and made more than 400 appearances between 2001 and 2017.

Burrow was capped 15 times by England and played five Tests for Great Britain, but he was best known as part of the team that won the Super League in 2004.

It ended the club’s 32-year wait for a title, and he was then named Man of the Match in the Rhinos’ 2007 and 2011 achievements.

The team’s touching tribute tonight said: ‘Rob inspired the entire country with his brave battle against Motor Neurone Disease (MND) since his diagnosis in December 2019. He passed away peacefully at Pinderfield’s Hospital near his home surrounded by his loving family after becoming ill earlier this week.

‘Burrow played his entire career with Leeds Rhinos and won every honour with the club as part of their golden generation. A hard working and dedicated player, his fearless performances made him one of the most respected players in the Rhinos ranks.’

Dan Walker posted on X in response to the sad news: ‘He was the little fella who made a massive impact on the pitch and an even bigger one off it.

‘Rob Burrow taught us so much in the way he dealt with his MND diagnosis and inspired millions with his continued determination and desire to make a difference for others. Sending all my love to Lindsey and their kids, his sisters, his mum and dad and all those who will miss him so much.’

Prime Minister Rishi Sunak paid tribute: ‘Rob was an inspiration to everyone who met him or who heard his incredible story. I was honoured to spend some time with him last year.

‘He drove a fundraising campaign that supports vital new research improving the care for others – not least through the creation of The Rob Burrow Centre for Motor Neurone Disease in Leeds. He leaves behind an amazing legacy and my thoughts are with his friends and family.’

Labour leader Keir Starmer called it ‘extremely sad’ and posted on X: ‘Rob leaves behind an incredible legacy in his work to raise awareness and advocate for those with Motor Neurone Disease. My thoughts are with his family and friends through this time.’

Burrow rose through the Leeds club’s Academy ranks to make his debut in 2001.

In 2004, he was part of the Leeds team that ended a 32-year wait to win the Championship with victory in the Grand Final.

It was the first of eight Grand Final wins for Burrow including winning the Man of the Match award in the 2007 and 2011 Old Trafford showpieces. The 2011 game included his breathtaking try that is still regarded as the greatest Grand Final try ever scored.

In total he made 492 appearances for the club, placing him in fifth in the club’s all-time list of career appearances.

The rugby star won the Challenge Cup at Wembley in 2014 and 2015 as well as three World Club Challenges and three League Leaders Shields.