Former rugby league player Rob Burrow will share an intimate glimpse into how he lives with a degenerative illness in a documentary released next month.
Father-of-three Rob, 40, was diagnosed with motor neurone disease in December 2019, when he was told he may only have one year to live.
In a documentary set to air on BBC Two, Rob Burrow: Living With MND, the former Leeds Rhinos player and campaigner gives viewers an insight into how he and his family cope with his diagnosis.
The programme shows how Rob’s wife and teenage sweetheart Lindsey supports him, along with his children Macy, 10, Maya, seven and Jackson, three.
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 tells his mother Irene she ‘has a gob on her’.
A new BBC Two documentary Rob Burrow: Living with MND follows the former rugby league player’s journey with the degenerative illness
Rob Burrow (pictured with his daughter Macy) was diagnosed with motor neurone disease in December 2019
The documentary will give an intimate glimpse into Rob’s life as he manages the symptoms of motor neurone disease
Rob is married to physiotherapist Lindsey and the pair share three children Maya, 10, Macy, seven and Jackson, three
Lindsey, a physiotherapist, also reveals how she juggles caring for her husband, who needs 24/7 support, with working and looking after the children.
Lindsey and Rob met as children and when she was 14 she stood him up on their first date to the cinema because her mother found out – 21 years after they started going out they still remain very much in love.
Viewers will also meet the NHS staff treating Rob in hospital in West Yorkshire, and will interview 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 fund-raising 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)
During the documentary, Rob says: ‘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 insists he’s ‘not giving in’, right up until his ‘last breath’ and has ‘too many reasons to live’.
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.