Former Leeds Rhino rugby star Rob Burrow, whose life has been devastated by motor neurone disease, made his wife burst into tears because he told her to ‘find someone else’.
He said living with the degenerative disease is like being ‘a prisoner in your own body’.
Father-of-three Rob, 40, who was diagnosed in December 2019 – when doctors warned he may only have two years to live, will share an intimate glimpse into how his family cope with the disease that will kill him prematurely in a new BBC2 documentary released on October 18.
Rob Burrow: Living With MND sees the former Leeds Rhinos player and campaigner revealing how he and his wife and teenage sweetheart Lindsey cope with his illness, along with his children Macy, 10, Maya, seven and Jackson, three.
NHS physiotherapist Lindsey said: ‘He always says, “Find someone else, you’re still young”.
‘There will never be anybody else. No one can ever take Rob’s place.’
She said when they met it was ‘love at first sight’ and when they married in 2006 they had the ‘perfect life’.
A new BBC Two documentary, Rob Burrow: Living with MND, follows the former rugby league star three years after doctors told him he had motor neurone disease (Pictured with his wife, Lindsey, in a swimming pool)
Lindsey used to dance with his older sister and Rob got her number through their friends.
She said: ‘We did arrange to meet but my mum found out I was going on a date so I stood him up.
‘When we did go on a date to the pictures, his mum Irene picked us up.’
Rob interrupted: ‘I felt sorry for her, because she stalked me for years. I’m only kidding – I have been going out with her since forever.
‘She was my childhood sweetheart. I love her more each day.’
Rob added: ‘I could not ask for a better help than my beautiful wife Lindsey. I know when you get married you say that you will be there in sickness and in health.
‘I did not think she signed up to look after me so soon. She is my very own superhero and I could not be alive without her help with everything. I love her so much.’
Yet Lindsey said: ‘I’m so lucky to be Rob’s wife, despite the situation that we are in. Would I change things? Of course I would.
‘But we can’t, so we just have to make the best of it and enjoy every moment that we have together. But it’s devastating, it’s heartbreaking.’
In one intimate scene, Lindsey is shown carrying her husband up the stairs at night – but viewers will also see cheekier moments from Rob – for example when he told his mother Irene she ‘has a gob on her’.
Rob Burrow (pictured with his daughter Macy) was diagnosed with motor neurone disease in December 2019 – and warned he might only have two years to live
The documentary will give an intimate glimpse into Rob’s life as he manages the symptoms of motor neurone disease – with the help of his wife Lindsey
Rob, pictured before falling ill, is married to physiotherapist Lindsey and the pair share three children Maya, 10, Macy, seven and Jackson, three. Since being diagnosed he told to ‘find someone else after I’m gone’
Another emotive scene saw the couple in a swimming pool together, as she glided her husband around the pool.
During the documentary, Rob said: ‘I’m a prisoner in my own body, that’s the way MND gets you, the lights are on, but no one’s home.
‘I think like you, but my mind doesn’t work right. I can’t move my body.’
But he insisted he’s ‘not giving in’ right until his ‘last breath’ because he has ‘too many reasons to live’.
Lindsey, a physiotherapist, also reveals how she juggles caring for her husband, who needs 24/7 support, with working and looking after the children.
Viewers will also meet the NHS staff treating Rob in hospital in West Yorkshire, and will hear from Rob’s former teammate and best friend, Kevin Sinfield OBE, who has raised millions for MND research since Rob was diagnosed.
The former Leeds captain completed his latest fundraising challenge in March this year.
Rob (pictured on the rugby pitch with his children Macy, left, Maya, right and Jackson, on his father’s shoulders, in January 2020) retired from rugby following his diagnosis
Rob with his wife Lindsey and two daughters at the National Television Awards at O2 Arena in 2021
Sinfield raised over £500,000 for the MND Association and the Leeds Hospitals Charity after former Leeds team-mate Rob Burrow (L) was diagnosed with motor neurone disease in 2019
Around 1,000 supporters were at his old ground to witness the completion of his 101-run mile from Leicester, where he now works as defence coach with the Tigers, inside 24 hours.
Sinfield raised over £500,000 for the MND Association and the Leeds Hospitals Charity to build a new care home in the name of his former Leeds team-mate.
In December 2020, Sinfield helped raise over £2.7million by running seven marathons in seven days.
Rob of Leeds Rhinos walks out with his child Jackson ahead of the Jamie Jones-Buchanan testimonial between Leeds Rhinos and Bradford Bulls at Emerald Headingley Stadium in 2020
Burrow was a Super League champion eight times in his career before retiring in 2017 (pictured Betfred Super League Grand Final at Old Trafford in 2017)
WHAT IS MOTOR NEURONE DISEASE?
Motor neurone disease is a rare condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages.
It’s caused by a problem with cells in the brain and nerves called motor neurones. These cells gradually stop working over time. It’s not known why this happens.
Having a close relative with motor neurone disease, or a related condition called frontotemporal dementia, can sometimes mean you’re more likely to get it. But it doesn’t run in families in most cases.
Early symptoms can include weakness in your ankle or leg, like finding it hard to walk upstairs; slurred speech, finding it hard to swallow, a weak grip, and gradual weight loss
If you have these sympthoms, you should see a GP. They will consider other possible conditions and can refer you to a specialist called a neurologist if necessary.
If a close relative has motor neurone disease or frontotemporal dementia and you’re worried you may be at risk of it – they may refer you to a genetic counsellor to talk about your risk and any tests you can have
Source: NHS UK
BBC journalist and Breakfast presenter Sally Nugent, who has become friends with the Burrow family through following Rob’s story, said: ‘This film shares the brutal reality of living with motor neurone disease, not just for Rob, but the impact it has on his whole family and friends.
‘What he is doing will have a lasting legacy for people diagnosed today and in years to come.’
She added: ‘The documentary is an unflinching look at life through Rob’s eyes. We see him fight daily for small victories that we might take for granted.
‘Every breath is a battle. Every moment with his family is a win for them all. But he is as funny today as he was the first day I met him, when he was just one of the greatest rugby league players of all time. He is still that, and so much more.’
Last year wheelchair-bound Burrow and his family hoped a new treatment could buy him enough time for a cure to be found.
The former Leeds Rhinos, England and Great Britain star told the Sunday Mirror: ‘This drug is my hope that I see my kids grow up.
‘Without this drug it will be a bleak outcome. I worry about leaving Lindsey to raise our kids alone – it is the last thing I want to do.
‘I want to see my trio all reach 18 and so I live in hope. I am a realist but without hope there is nothing.’
Several ex-rugby league players have announced their intention to sue their governing body, having developed early-onset dementia after suffering successive head blows during their careers.
Now medical experts are considering whether knocks to the head, with Rob being concussed many times in his playing career with Leeds Rhinos, might have contributed to his MND.
In 2021, he told the Daily Mail: ‘I was knocked out about 20 times during my career and had hundreds of minor concussions during training and games.
‘The authorities got wiser to the dangers as my career progressed, cracking down on high tackles and introducing concussion assessments, but you can never make any collision sport completely safe.
‘But while the link between concussions and brain damage has been proven, the medical experts don’t know if head knocks or extreme physical activity cause MND. But would I change anything? Absolutely not.
‘I suppose a lot of people would be racking their brains, trying to think of things they could have done differently. But how could I not feel lucky?
Kevin and Rob launched the new Marathon at Headingley Stadium to officially launch the Rob Burrow Leeds Marathon
Family and friends show their support for the Rob Burrow Leeds Marathon on May 2022 to raise vital funds for the Leeds Hospitals Charity’s appeal
‘I’ve achieved so much. I have a wonderful wife and three beautiful children. What more does a man need?’
Recently Rob had a poignant message for the Leeds Rhinos players stepping out at Old Trafford for last weeks Grand Final.
He said: ‘None of us know what twists and turns our journey in life will take, so make sure you enjoy the special moments when they are in front of you.’
Of the Rhinos’ eight Grand Final wins, Burrow was involved in all of them, four came against the Saints, in 2007, 2008, 2009 and 2011.
Rob Burrow: Living with MND airs on BBC Two at 7pm on October 18th