Inside Rob Burrow’s four-year battle with Motor Neurone Disease

On Jun 2, 2024

Published: 20:04, 2 June 2024 | Updated: 20:12, 2 June 2024

Inspirational former rugby player Rob Burrow has passed away at the age of 41 following a battle with motor neurone disease, Leeds Rhinos have announced.

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

The athlete represented both England and Great Britain during his impressive 16-year long career and made more than 100 appearances between 2001 and 2017.

As well as being one of the UK’s most successful rugby stars, he was also a fierce campaigner, raising awareness for MND along with his friend and former teammate Kevin Sinfield.

Tributes have flooded in for the athlete and father-of three after his five-year battle.

Rob Burrow opened up about his battle with motor neurone disease in an ITV documentary Lindsey and Rob: Living with MND

Rob posing with his wife Lindsey (left), eldest daughter Macy (back right), second daughter Maya (front right), and son Jackson (sitting on the arm of the wheelchair)

The rugby legend spent his entire club career with Leeds and made more than 400 appearances between 2001 and 2017 before his shock diagnosis in 2019

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

Burrow was diagnosed with the degenerative condition in 2019 and said that he first started to experience symptoms while at an awards show.

The athlete revealed that he started slurring his speech at the Leeds Rhinos event and his caring teammates encouraged him to see a doctor.

After the appointment, Burrow was diagnosed and his family revealed in their ITV documentary Lindsey & Rob: Living With MND that the news came as a complete shock.

He explained that he went for an MRI scan and blood tests which came back clear leading the family to be quite optimistic but then a neurologist delivered a devastating blow.

But he said: ‘It’s not good news. I’m sorry to tell you it’s motor neurone disease.’

He said: ‘When I was diagnosed, I think I took it better than Lyns. I think I was just happy for it to be me and not anyone else in my family.’

Despite his diagnosis, the former athlete insisted on living his life to the fullest.

On an appearance on This Morning last year he said: ‘I refuse to give in. I will fight and fight to my very last breath, I use positivity to get me through. Sometimes, even when things are hard, I like to crack a joke and make everyone laugh.

‘When I was diagnosed I was terrified, but I soon realised I could control how I would approach my situation mentally.’

Last year in a heart wrenching documentary, the former rugby star showed what day to day life was like for him and his family.

Lindsey and Rob’s daughters, Macy, 11, and Maya, seven, have helped to look after their father

Rob, who was diagnosed with motor neurone disease (MND) in 2019. His wife Lindsey took on his care after he became non-verbal and could only eat liquidised food

The 40-year-old, a father-of-three, was also forced to sleep downstairs and some nights required a ventilator

Burrow playing for the Leeds Rhinos. The friends made while playing for the team have played a big part in raising awareness for MND with former teammates completing challenges to raise money

Rob Burrow and friend and former teammate Kevin Sinfield cross the finish line of the 2023 Rob Burrow Leeds Marathonto raise awareness for MND

Rob Burrow alongside wife Lindsey (who ran the half marathon), daughters Macy and Maya and Kevin Sinfield last year to raise awareness for Burrow’s condition

Rob with his wife Lindsey before the Rob Burrow Leeds Marathon on May 12. 2023

In 2023, Burrow had significantly deteriorated from his sporting self just a few years earlier.

WHAT IS MOTOR NEURONE DISEASE?

Former rugby league player Rob Burrow was among several players diagnosed with motor neurone disease (MND) in recent years.

Burrow, who has died aged 41, was just 37 and had three children under the age of eight with wife Lindsey when he made the announcement on December 19 2019 that he had MND.

Here are some key questions and answers about the degenerative disease:

– What is MND?

It is a life-shortening neurological disease which affects the nerves that control movement so muscles no longer work, according to the MND Association.

The charity says these nerves – motor neurones – control muscle activity such as walking, speaking and swallowing.

But as they are attacked, the brain’s messages gradually stop reaching muscles, leading to weakness and wasting followed by breathing difficulties.

The MND Association says some people also experience changes to their thinking and behaviour.

– What are the early signs of MND?

The NHS says MND symptoms occur gradually so may not be obvious at first.

Early symptoms include weakness in ankles or legs, slurred speech, difficulty swallowing food, a weak grip, muscle cramps and twitches and weight loss.

– How is MND treated and can it be cured?

There is no cure for MND and the disease will progress over time, according to the MND Association.

How long people live with the condition varies but some survive for years, and even decades, such as Professor Stephen Hawking, who lived for more than 50 years after being diagnosed aged 21.

MND can be treated with occupational therapy, physiotherapy, a medicine called riluzole and medication to relieve muscle stiffness and help with saliva problems, the NHS said.

– Who does the condition affect?

According to the MND Association, up to 5,000 adults in the UK have the disease at any one time.

The organisation says it can affect any adult at any age, but it is more likely to occur in people over the age of 50.

– What causes MND?

The health service says it is caused by a problem with cells in the brain and motor neurones.

It is not known why these cells and neurones gradually stop working over time.

The NHS says having a close relative with MND – or a related condition called frontotemporal dementia – can sometimes mean you are more likely to get it, but in most cases it does not run in families.

Just a year before his death, Burrow weighed just seven stone, was non-verbal and could only eat liquidised food spoon fed to him by his wife Lindsey.

He also had to sleep downstairs and some nights required a ventilator to decrease high levels of carbon dioxide in his body.

But while the physical changes proved challenging for the family, Burrow revealed that the hardest part was the toll the disease had taken on him being a father.

‘The hardest thing for me is not being able to be the dad I want to be,’ Rob, who operates a computer with his eyes to communicate, said on the programme.

‘I would give anything to be able to kick a ball with my son or read the kids a bedtime story. It’s the small things and things that often we take for granted that having MND makes you appreciate,’ he added.

Rob’s determined wife refuses assistance from carers and equipment, instead carrying him around their home and from his wheelchair to the car.

Speaking on the documentary, she vowed to continue looking after her beloved husband ‘while I’m physically able’, adding: ‘I know he’d do the same for me’.

Lindsey told The Mirror: ‘We haven’t really discussed the option of carers. We don’t want stairlifts, hoists and things, for me it can become quite clinical.

The father-of-three also praised his wife, who looked after him and their children while working part-time as a physiotherapist for the NHS.

‘I am extremely proud of Lindsey. I have nothing but admiration for her. Without her, I wouldn’t be here today,’ he said at the time.

‘You just want to do what you can, while you can, for as long as you can. He’s my husband, I want to care for him. You say those vows, in sickness and in health, that’s what you want to do.

‘He’ll often say: “Thank you for looking after me, I wouldn’t be here if it wasn’t for you doing these things.” I know how grateful he is.’

Rob said the documentary was made with a very small team of people who have been there ‘since the start.’

He explained: ‘So many people feel like the diagnosis is the end for them. But it is not.

‘I wanted to show that you don’t need to hide away, or stay at home or be frightened of going out. You can still live every single day.

‘That is my philosophy and it’s really simple.

‘I feel for the people who are broken by the words “you have MND”.

‘I know I was for a while. So I hope I can show them that there is a way you can live with this. If I can help one person then I feel like our film has done its job.’

The couple have been married for 17 years and first met when the former rugby league star was a ‘shy’ 15-year-old.

The former rugby player was given two years to live following his diagnosis and last year he was struggling against having no voluntary movement control aside from his eyes, which he used to spell messages on a screen and tell his wife ‘he couldn’t be more proud’.

But Lindsey admited: ‘I don’t think he can really get any worse.’

Burrow surpassed medical expectations though, living for five years after his diagnosis, appreciating every day wile being supported by his children, wife and parents.

Lindsey said Rob introduced a ‘no tear’ policy early on in his diagnosis and added that the family managed to stick to it ‘most of the time.’

Burrows on the rugby pitch with his three children Macy, Maya and Jackson

Burrow revealed that one of his greatest struggles was not being able to help look after his children but said they had been brave and supported him throughout his health battle

‘There are occasions where we occasionally break the policy, but that was Rob’s wish, that we carry on life as normal, we live every day to it’s fullest and just make as many happy memories as a family as we can,’ she said.

She has also opened up about asking her husband questions around his funeral wishes, with Rob telling her she is ‘still young’ and ‘should find someone else’.

Lindsey has also praised former teammate Kevin Sinfield, and said he should be awarded a knighthood for his fundraising efforts.

Rob was carried across the finish line at the inaugural Rob Burrow Leeds Marathon by Sinfield last month after being pushed around the 26-mile course in a wheelchair.

The pair were raising money for motor neurone disease (MND) charities and used a specially-adapted chair to join 12,500 other runners in the first Leeds marathon in 20 years.

Rugby coach Sinfield has raised over £8million for MND charities since friend and former Leeds Rhinos team-mate Burrow was diagnosed with the condition in late 2019.

The 42-year-old also completed his Ultra 7 in 7 Challenge in November when he ran seven back-to-back ultra-marathons, running around 40 miles each day.