Rob Burrow’s tearful parents reveal how he passed away surrounded by family and accepted it was his time to go – as they join Kevin Sinfield at groundbreaking of £6m MND centre that will become his greatest legacy

Rob Burrow’s tearful parents have revealed how he died ‘peacefully’ and ‘on his terms’ while surrounded by his adoring family as they joined his best friend and former teammate Kevin Sinfield at the site of a new MND centre today.

His father Geoff Burrow said the rugby league star ‘didn’t suffer’ as he passed away in hospital on Sunday at the age of 41 five years after being diagnosed with Motor Neurone Disease.

The father-of-three had his devoted wife Lindsey, his three children, his parents Geoff and Irene, as well as his two sisters Joanne Hartshorn and Claire Burnett at his bedside at Pinderfields Hospital in Castleford as he moved on.

The MND campaigner’s final wish had been for construction to begin on a new £6million specialist centre for people dealing the incurable illness days in Leeds before his death.

There were emotional scenes this morning as Mr Burrow dug the first hole on the site, watched by the rest of his family as well as his best friend Kevin Sinfield, who has raised millions of pounds for MND awareness since Rob’s diagnosis five years ago.

It comes as Rob’s father told journalists the family is determined to keep fighting until a cure for MND has been found.

Asked what touched people about Rob’s ‘story’, his father said: ‘He was genuine, what you saw is what you got. He didn’t really like publicity believe it or not, he did it and he wants us to keep doing it to get that cure. 

‘I wish we would have got it before he passed but we will get it for him and all the poor families that suffer from MND.’ 

His mother added: ‘We are going to keep banging that drum, we will get there.’

Speaking at the venue, Mr Burrow revealed that his son had accepted it was his time to go as he passed away over the weekend. 

He said it was ‘obviously a very sad day but it was peaceful and we made sure he ended his journey on his conditions, we didn’t want any suffering and he didn’t suffer, it was very peaceful.

‘He was in hospital. He smiled, we got sad and he gave us the look, you know “pack it in smile” and what have you and we did our best.’

Mr Burrow added: ‘It was very sad, surreal, you know you feel as though there is going to be a big difference and there isn’t, we still haven’t quite accepted it yet.’

Doctors had warned the family this was the end. ‘We knew what was coming’, he said.

Rob had expressed his wishes in advance about treatment at end-of-life. His father indicated that the brave former rugby league player had accepted his time was up and denied further resuscitation efforts.

Mr Burrow said: ‘I wanted to make sure it was what Rob wanted, if it hadn’t have been then you know we would have fought on. I think his body has had enough. It was on his terms.’

Adding as tears welled up: ‘When he took his final breath you think “what do we do”, but it was like he’d gone to heaven and I’m sure he is.’

His devoted wife Lindsey said that the father-of-three wished for ground to be broken today so work can officially begin on the new £6.8million purpose-built care centre which he spearheaded fundraising efforts for.

His mother Irene Burrow described how she was glued to the television on Monday morning, awestruck at her son’s legacy. She said: ‘I have never been so proud of the amount of publicity we’ve had and the love that everybody is giving us and it helps. 

‘He was such a lovely, lovely person, anybody that met Rob would always say that and I hope we are doing him proud.’

Commenting on today’s media attention and the ceremony to begin work on the MND centre, Mr Burrow said his son would be ‘smiling and saying “keep checking on them Dad and make sure they keep digging” – but we don’t have to check, we know when this is built just try and imagine what it will be like, I just hope I see it.’

Mr Burrow said the day after his death it was ‘Rob’s strength that is keeping us all going.’

Clutching a bunch of flowers, his mother Mrs Burrow said her son would be remembered for ‘his bravery on and off the field and his love for Leeds Rhinos.’

‘Just an amazing young man, small but strong, a big heart and I think that’s what got him through it. He’s such a lovely lad and he’s loved by everybody, he’s got school friends that stayed with him right through and supported him.’

His great friend Kevin Sinfield was at the ceremony but kept his thoughts to himself.

The family paid tribute to Mr Sinfield’s friendship and fundraising efforts as a true inspiration. ‘Kevin, what a tremendous guy. He [Rob] was so proud of Kev.’

The family later visited the tributes laid down by members of the public outside Leeds stadium, near the statue of former Leeds Rhinos player John Holmes. 

His friend Phil Daly said that despite the heartbreak and widespread grief felt following his loss, ‘Rob wouldn’t want us to waste a day’ in the ongoing battle with MND.

The 41-year-old had helped raise funds for Leeds Hospitals Charity, where he received care, in the years following his diagnosis and up to his tragic death which was announced last night.

Following the news of Rob’s passing, which came after he was diagnosed with the illness at the age of 37 in 2019, tributes have piled in for the father-of-three with Prince William calling him a ‘legend’ who had a ‘huge heart’.

His friend Kevin Sinfield, who helped Rob raise £15million to help fight MND and carried his fellow former rugby star over the line in the Leeds Marathon last year, emotionally said he would miss his ‘little mate’.

Fans have left flowers and tributes him at his former stomping ground, Leeds Rhinos’ Headingley Stadium, while current players for the club also paid their respects this morning. 

The rugby icon passed away at Pinderfields Hospital near his home surrounded by his family after becoming ill earlier in the week.

After his death was announced, it was revealed that his family had urged the charity to press on with plans to begin construction on the MND centre in his memory.

Work was to begin on Monday with an appearance from the Burrow family and despite the news of his death last night, the charity has said construction will go ahead as planned.

Rob, who fell gravely ill early last week, had told staff on site at Seacroft Hospital in Leeds on Friday that work should begin immediately. 

His friend Phil Daly said today: ‘We will have the groundbreaking today, that was Rob’s wishes. We spoke to Lindsey on Friday and that’s what he said. We can’t waste a day and Rob wouldn’t want us to waste a day, we start today.’

He added: ‘It’s no reflection of the NHS staff who looked after Rob – they did a great job – but the facilities just aren’t up to scratch. When you’re given that diagnosis in the facilities that are there now, it makes the whole situation so much worse.

‘This centre will be somewhere where people can get their diagnosis and actually find out the next steps. Rob was at the heart of planning for it – there will be family areas there to help children understand in an environment that is comforting.’

Rob’s passing was announced on Sunday evening, and following the news his bereft family paid tribute to the ‘true inspiration’ he showed’.  

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

‘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.’ 

They added: ‘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. In a world full of adversity. We must dare to dream.’ 

Following Rob’s passing donations have continued to flood in to the Leeds Hospital Charity’s JustGiving page, with nearly £5.5million raise so far.

It comes after the official X account of Prince William and Princess Kate led tributes to the star and posted a touching message and expressed their condolences to his family.

Paul Watkins, director of fundraising at Leeds Hospitals Charity, said: ‘The family still want it to go ahead. That just shows how magnanimous and gracious they are.

‘All along they have thought about others.’

The build is expected to take about a year and the charity remains focused on raising the last £1million of their target.

Mr Watkins, 55, added: ‘We’ve raised £5.85 million of the £6.8 million centre and we will continue until we get there.

‘We’re just devastated at the news today. Rob’s work transcended the Rugby League community. At a time when he was most vulnerable he put himself out there.

‘Few people in the UK now don’t know what MND is, and a lot of that is because of Rob.

‘I was lucky enough to be in the room with him many times and fortunate enough to catch that glint in his eye or his smile. His smile would light up any room.

‘He was a joy to be around.’ 

The proposed building will have an east and west wing, with the central space designed as a community focused area with reading and quiet spaces.

The official X account of Prince William and Princess Kate earlier posted a touching message and expressed their condolences to the brave legend’s family.

The post read: ‘A legend of Rugby League, Rob Burrow had a huge heart.

‘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.’ It was signed off with a W for William.

Sinfield released a heartfelt statement on social media on Sunday evening following Burrow’s passing that read: ‘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 community but for all those who saw and heard your story. 

‘My love and thoughts go out to your beautiful family, Lindsey, Macy, Maya, and Jackson, to your lovely parents Geoff and Irene, sisters Joanne and Claire and your wider family and friends.

‘You will continue to inspire me every single day. I have lost a dear friend and I will never forget the special times we shared both on and off the pitch. 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.

‘The last 4 and a half years you showed the world what living and loving looked like and this was always done with the biggest smile on your face.

‘I will miss you my little mate. All my love, Kev.’

Former Leeds Rhinos player and teammate of Rob, Jamie Jones-Buchanan revealed that he had only needed to look at Kevin’s face on Sunday night to know Rob had died. 

The rugby league coach said: ”I’d gone to pick something up, he’d found out about 45 minutes before. When I saw his face, I could tell.

‘He was struggling, really struggling… He’s an emotional guy is Kev.

‘The overwhelming thought for me was how important it was for me to spend those moments when I got back home with my wife and kids so I just turned my phone off

‘If Rob had another 30 seconds left, I doubt he’d pick up his phone. He’d spend it with Maya, Macy, Jackson and Lindsay, and I thought that’s what I need to do.’

Attending Headingley stadium on Tuesday morning to see the floral tributes, Mr Jones-Buchanan said Mr Burrow had ‘smashed’ expectations after being diagnosed with motor neurone disease.

He said: ‘Every moment was spent doing the right thing, shining a light on the people that needed it the most, and he transcended not just the sport but the nation, and he’s raised millions, he created so much awareness for motor neurone disease.

‘He never said ‘Why me?’, he never complained, he never moaned, very stoic. He fought every minute, he was so brave.’

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.

Heart-wrenching tributes last night poured in for the ‘hero’ who ‘never allowed others to define what he could achieve’.

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

Broadcaster Dan Walker posted on X to ‘send all my love’ to the grieving family and said the rugby legend ‘taught us all so much’ with his ‘continued determination and desire to make a difference for others’.

Presenter and ex-footballer Chris Kamara posted: ‘What a trooper Rob was. He fought a real battle with MND. 

‘Rob raised awareness and funds, despite his condition, for other people to benefit from. The impact he leaves will be long lasting. RIP Rob what a hero.’

Paying tribute yesterday, 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. 

‘He used every opportunity to raise awareness of the disease, speaking publicly, undertaking media interviews and opening his life up in two moving BBC documentaries My Year With MND and Rob Burrow: Living With MND.’

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

A GoFundMe set up in his honour has reached an incredible £120,308 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 last night 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.’

Piers Morgan called it ‘incredibly sad news’.

He posted on X: ‘A remarkable man who fought wretched Motor Neurone Disease with such courage, fortitude and determination. He raised so much money, and so much awareness, and helped so many other people. RIP Rob.’

BBC Breakfast editor Richard Frediani also posted to call Burrow ‘the greatest of men’ describing him as a ‘champion on and off the pitch’. 

The MND Association’s statement read: ‘In doing so much, he inspired support from so many. On the weekend of the Challenge Cup Final in October 2020, fans and supporters donated an incredible £70,000 to the MND Association. 

‘Just two months later, Rob’s former captain Kevin Sinfield CBE took on the first of four incredible challenges raising more than £7 million for MND charities, including the MND Association. 

‘Rob and Kev’s friendship made headline news around the world. Thousands of well-wishers, not just in rugby’s heartland, but across the country donated, took on fundraising challenges and pledged support in tribute to Rob’s bravery.

‘Rob’s contribution to rugby league and awareness of MND were recognised in the 2021 New Year’s Honours List when he was made an CBE and that same year Rob accepted the role of patron of the MND Association. Rob was subsequently awarded a CBE in the 2024 New Year’s Honours list.

‘It is testament to the strength of feeling people have for Rob that the support in his name has never wavered.

‘The MND Association is incredibly grateful to Rob and his family for helping to raise awareness of MND, and funds for the Association, by sharing the details of their journey and by inspiring so many people both within the MND community and the wider public.’

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.

Touching tributes to the player on social media included one from the England Rugby account, which read: ‘Rest in Peace Rob’ with a prayer hands emoji and a broken heart.

Another called him a ‘hero’ and read: ‘He’ll never be forgotten. We’ll make sure of that.’  

A third read: ‘Hero. The definition of a legend. Thoughts with his family.’

Last month, Burrow paid tribute to his wife as he said he’s played some tough people in his rugby career, but no one is ‘as strong’ as Lindsey.

A married father of three young children, he was unable to talk but could articulate his thoughts through Eyegaze, a device which translates blinks into letters and then builds them into words on a screen.

The former captain of the Leeds Rhinos and member of the British rugby league teams paid tribute to his supportive wife Lindsey on BBC Breakfast.

Lindsey cared for Rob, their three children and works as an NHS physiotherapist. She has previously spoken about the ‘huge emotional and physical challenges’.

Her husband told BBC Breakfast: ‘I’m trying not to be soppy but some of the things that Lindsey does for me is proof I’ve found my one and only.

‘I’ve played with some strong players in my rugby career but no one is as strong a personality than Lindsey. I hope that will inspire people to be more like her…what a world that would be.’

In 2019, the Prince of Wales told him that ‘we’re all so proud of you’ while visiting Headingley Stadium in Leeds – to present the rugby legend with his CBE.

The royal also presented Rob with the medal – still in its box – as he lauded the former athlete’s legacy and efforts in campaigning.

‘Thank you and congratulations – for all the inspirational work you’ve done, Rob,’ Prince William said as the sporting icon was surrounded by his beaming wife and their children in a video shared by BBC Breakfast on X.

‘You’ve been amazing, you really have and everyone’s so proud of you.

‘We’ve all been following your case. You’ve changed so many people’s lives with MND with what you’ve done. We’re all so proud of you.’