How Rob Burrow’s wife Lindsey became his carer and before his death rugby star said ‘no-one is as strong as her’

Lindsey Burrow became her rugby star husband’s carer after he was diagnosed with Motor Neurone Disease five years ago and tended to him until he died.

Rob Burrow has passed away at the age of 41 after a lengthy battle with disease. He died peacefully in hospital, surrounded by his family.

The couple got together when they were just 15 years old and shared what Lindsey has described as a ‘perfect’ life with a ‘great marriage, supportive families, and three beautiful children’.

But they were hit with an unexpected challenge when the former Leeds Rhino rugby star was diagnosed with the incurable and life-limiting condition in 2019. 

Lindsey stepped in as his unpaid carer while simultaneously looking after their three children and continuing to work for the NHS as a physiotherapist.

Despite the ‘huge emotional and physical’ strains that came with caring for her husband, Lindsey remained Rob’s rock with the athlete, before his death, saying that there was ‘no one is as strong as her’.

Lindsey has said that she knew from the ‘very beginning that I wanted to spend the rest of my life’ with Rob.

But their lives drastically changed when Rob was diagnosed with motor neurone disease (MND) in 2019. 

He was just 37 and had three children under the age of eight at the time, with doctors then warning he may only have two years to live.

‘I couldn’t begin to imagine what was going through his head, but it was him telling me to pull myself together, not the other way around,’ Lindsey wrote in a Mail on Sunday column in 2021, recalling the moment Rob told her of his diagnosis.

‘Rob made me understand that we had a stark choice: either we could waste what time he had left by dwelling on all the things he’d miss out on when he was gone, or we could make as many happy memories as possible.’

The family’s version of ‘normal’ shifted, with Lindsey having to take on tasks that Rob typically would have done, such as doing school runs or reading bedtime stories. 

As his condition worsened, Rob became unable to feed himself, dress himself, or go to the toilet himself. 

Before his death 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.

In addition to the challenges associated with the disease, Lindsey also battled caring for her husband during a pandemic. 

‘There was a stage, during the first lockdown, when I had no outside support. Occasionally, I felt like giving up,’ she penned in the column.

‘But when I married Rob, it was for sickness and in health. That might not sound very sexy, but when all the other constituent parts of love are stripped away, it’s all that’s left. When Rob was diagnosed, love was being the best carer to Rob I could be.’

She said that although Rob ‘might think I’m Superwoman’ that she was not special, but instead doing what ‘anyone in my shoes would’, adding: ‘When you love and care about someone, your priority is to make them happy, whatever the circumstances. And as long as Rob and the kids are happy, then so am I.’

But the journey was not without its struggles and earlier this year, in the ITV documentary Lindsey Burrow: Who Cares for Our Carers?, she shared the toll that Rob’s devastating condition had on their family.

‘Being a carer is tough, and it has huge emotional and physical challenges, I think a lot of carers that you speak to, they’ll say that you lose friends,’ she said.

‘I’ve been an unpaid carer for almost five years.

‘My husband Rob was diagnosed with motor neurone disease in December 2019, since then, I’ve balanced caring for Rob while caring for our three young children and continuing to work for the NHS as a physiotherapist.

‘But although I’m proud to be able to do that, it’s had a huge impact on my life.’

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

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

But determined Lindsey refused assistance from carers and equipment, instead carrying him around their home and from his wheelchair to the car.

Speaking on their ITV documentary Lindsey & Rob: Living With MND, Lindsey vowed to continue looking after her beloved husband ‘while I’m physically able’, adding: ‘I know he’d do the same for me’.

She also 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 praised his wife, saying: ‘I am extremely proud of Lindsey. I have nothing but admiration for her. Without her, I wouldn’t be here today.’

She added: ‘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.’

But while the physical changes proved challenging for the family, Rob revealed in the documentary 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 last year.

‘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.

He also paid tribute to Lindsey last month, saying that no one was ‘as strong’ as his wife.

He 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 turn, Lindsey said: ‘What keeps me going is I have three beautiful children, I have a husband I adore and I think the world of and is battling a life limiting disease. He is an inspiration to all of us. Despite the situation there is reason to smile.’

Rob first started to experience symptoms of MND while at an awards show. He reportedly started slurring his speech and his caring teammates encouraged him to see a doctor. 

After the appointment, Rob was diagnosed with MNd. His family, in their ITV documentary Lindsey & Rob: Living With MND, previously revealed that the news came as a complete shock.

Rob shared how 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.

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

Rob, recalling the moment, 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.’ 

Rob was diagnosed with MND, 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.

Over the past five years, Rob defiantly fought the disease’s progress and devoted himself to fund-raising for a range of MND charities.

He had been spearheading a £6.8million charity appeal for Leeds Hospitals Charity, where he received care, for a state-of-the-art purpose-built care centre for those with MND living in and around the city.

With almost £6 million raised for the project, work was to begin on Monday with an appearance from the Burrow family. Despite the news of Burrow’s death on Sunday, the charity has said construction will go ahead as planned.

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, said the charity was ‘devastated’ by Rob’s death, adding: ‘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 added: ‘He was a joy to be around.’

In January, the Prince of Wales honoured Rob for his charitable efforts, telling him ‘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. ‘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.’

MND affects up to 5,000 adults in the UK at any one time – one in 300 people will be affected during their lifetime – and is more prevalent in people over the age of 50. 

The disease sees messages from motor neurones in the brain and the spinal cord, which tell the body’s muscles what to do, gradually stop working. This causes the muscles to weaken, stiffen and waste.

While some can survive for many years, such as Professor Stephen Hawking who lived with the condition for 55 years, for many the prognosis is less than five years.

There is no cure and just one licensed drug in the UK which only has a ‘modest effect’ in slowing down progress of the disease.

Charities such as the Motor Neurone Disease Association work to support sufferers and their families, particularly with managing their quality of life, as well fund research to find a cure for the disease.