'Dad went white and collapsed and it's the one time I have seen mum cry uncontrollably': Rugby hero Rob Burrow's sisters on the devastating moment their family learnt he had Motor Neurone Disease and the 'no tears' policy he requested from them

Following the death of rugby league star Rob Burrow at the age of 41, we revisit our interview from March this year, in which his sisters Jo and Claire revealed the impact that their brother's Motor Neurone Disease diagnosis had on their family.

The Burrow family have a no-crying policy.

It’s a tough ask when its most famous member is the ex-England and Leeds rugby hero Rob Burrow and his debilitating Motor Neurone Disease (MND) has upended all their lives.

Ever since his diagnosis in 2019, Rob, 41, has captured people’s hearts with his humour, resilience and indefatigable spirit. The image of him being picked up from his wheelchair and carried across the finish line at the Leeds Marathon by fellow Leeds Rhinos legend and childhood friend Kevin Sinfield last year moved the nation to tears. But not the Burrow sisters.

Opening up for the first time on how their little brother’s illness has impacted them, his sisters Jo Hartshorne, 49, and Claire Burnett, 44, say they quickly adopted the no-nonsense attitude of Rob and his wife Lindsey in order to get by.

Jo remembers being in their parents’ living room, round the corner from her own home, when Rob called from the hospital to tell them about his diagnosis.

‘I saw the colour drain from Dad’s face. He went white. “Oh no,” he kept saying. He passed the phone to me and collapsed to the floor.

‘Mum went into the kitchen and it is one of the few times in my life I have seen her cry uncontrollably. She properly wept.

‘I told Rob and Lindsey just to come over. Claire had to help Lindsey in as she was on the verge of collapse. 

Rob came over to Mum and Dad and they all hugged tightly. Typical of Rob, he said: “At least it’s me, not one of the kids.”’

MND is a rare condition which happens when cells in the brain and nerves, called motor neurones, gradually stop working. It’s not known why this happens. It mainly affects people in their 60s and 70s, but can affect adults of all ages. 

It is not curable, yet, but medication can delay death. It is linked to genetic causes in around 20 per cent of cases - but Rob does not have the genetic form of the disease.

‘Later that day, once Rob and Lindsey had returned home, they messaged us all,’ remembers Claire. ‘They said they had digested the news and decided they were going to carry on as normal and we are going to have a no-tears policy.’

Fortitude seeps through the family’s veins. Rob’s dad Geoff, 73, has a four-word policy, ‘I Can, I Will’, which he drilled into his three children growing up in the mining town of Castleford, just south of Leeds.

But legal secretary Claire, who is married to Michael, 53, a lawyer, admits her first reaction to Rob’s diagnosis was total denial.

‘I just couldn’t accept my super-fit brother, who had never drunk or smoked, and had so much to look forward to, and so much to give to his family and the rugby community, had been dealt this cruel hand,’ she tells me. 

‘It really hit me a few weeks after his diagnosis and I became ill. I was off work with depression and anxiety and was put on anti-depressants.’

The summer before his diagnosis in 2019, the family noticed he started to lose a lot of weight - the 5ft 5in sportsman already weighed less than 11st at the height of his career, and was often dubbed the ‘smallest man in super league’ - and his speech was occasionally slurred.

But they initially dismissed that as him not training as much following his retirement in 2017.

‘I did suggest MND to Claire but she said: “No way, don’t be daft.” Maybe we all wanted to think that,’ says Jo. 

‘Rob was worried and thought it might be something serious, especially when he started having muscle twitches in his arms. He said: “Look at these." But I played it down.’

When Rob was diagnosed in 2019, he was told he had only one to two years to live. Back then, his daughters Macy and Maya, now 12 and nine years old, were just seven and four, while son Jackson was just a baby. That Rob (who was awarded a CBE by Prince William earlier this year) has lived more than double the life expectancy is, Jo says, ‘down to his courage, spirit and the medication’.

Their dad found out about trial drugs in America for MND patients and now campaigns for them to be made widely available to UK sufferers.

Jo adds: ‘Rob and Lindsey saying they had a no tears policy eased my mind. We thought if they can do that then we can, too. We have no right to cry if they aren’t. Mum and Dad have been amazing, but she tells me she has a secret weep to herself in the bath - and she’s allowed that. I don’t know where they get their strength from.’

Rob and Lindsey, 41, an NHS physiotherapist, live a ten-minute drive from his family in nearby Pontefract, meaning, alongside Lindsey, mum Irene, 72, has been hands-on with her son’s care.

‘It’s inspiring to see Mum care for Rob while Dad scours the internet for treatments and developments, hoping to find something to cure the condition. Mum lifts Rob in and out of his chair, cuts his hair, feeds him - for her, she is doing what any other parent would do but seeing her in action is inspirational.’

Jo, who works as head of programmes for TK Maxx, says their lives have now been split into two halves: before Rob’s diagnosis and after.

`I struggle to watch rugby videos and look at photos when he was well,’ she says. ‘I can’t listen to songs the Leeds Rhino rugby fans sang at matches. That was when life was normal.’

Rob had spent all his 16-year professional career with Leeds Rhinos, playing more than 400 games for the club. His running speed and agility made him one of the most successful players in the competition’s history, winning two Super League championships, two Challenge Cups and two Harry Sunderland trophies.

After hanging up his boots, Rob embraced life as a dad and enjoyed coaching the Rhinos under-16s.

`He’d take the girls to baby ballet, often the only dad there, and he loved it,’ laughs Claire. `He was the perfect role model - then he’s dealt this blow. Life is so unfair.’

While they struggle to reflect on life before Rob’s diagnosis, the sisters cherish memories from their boisterous childhood. Even as a baby, Rob was often dressed in the blue and yellow colours of Leeds-born Geoff’s beloved Rhinos team, says Jo.

He was the golden boy of the family, the sisters happily admit. `As a toddler, he had a knitted hat in the team colours too,’ mum-of-two Jo laughs.

`He had a tiny rugby ball and ran about with it as soon as he could walk. As he got older, dad would set up an obstacle course in the lounge using cushions from the sofa and Rob would climb and jump under, over or through them.’

Claire can still hear the constant banging of their dad’s glass study doors as Rob scored a try with a felt rugby ball. ‘We’d be trying to watch our favourite TV shows and you’d just hear dad doing a running commentary then a thud as the ball hit the try line - the study door - a few minutes later. He’d be scoring again and again,’ she remembers.

‘Dad does the same now with Rob’s son, Jackson, who’s a mini version of his dad.’

Their life before Rob’s diagnosis is bursting with warm memories of Rob’s mischievous streak. As they got older, the trio got closer - with teenage Jo rallying her younger siblings into playing schools.

Claire laughs: ‘She was always the teacher. Rob and I had to sit there while she kept giving us maths tests - and we did them. Obviously we got them all wrong and got loads of crosses but Rob never cared. Then she did baking lessons and we mashed up digestive biscuits with water. It was disgusting!’

Jo adds: `He used to do as I said or I’d bite his nose, but then he became a pain when I did my pop concerts in the garage and driveway!’

Jo would also made her siblings deliver handmade posters through the neighbours’ doors advertising a sell-out concert in their driveway: ‘The local kids would all sit on our concrete drive. My stage would be on the edge of our garage. Claire and Rob had to serve lemonade through the rungs of dad’s ladders, as if it was a bar!

`I fancied myself as a Yorkshire Madonna, wearing the lace gloves as I belted out her songs and danced away. I was in full flow one show when Rob, who was about nine, and his pal Richard Poole, decided to gatecrash my show. They rode their BMXs straight into the garage and crashed onto my stage, bringing my show to a chaotic halt.’

But Rob’s role as annoying little brother ramped up a notch when Jo brought home her future husband, Paul, now 50, for the first time.

`Paul was obviously nervous and sat down on the sofa,’ she says. ‘Rob was 11 and launched himself next to him, asked a couple of bland questions before looking at him and asking: “Do you trump?” Paul went bright red and ignored him. Thankfully we survived that!’

Being fleet-footed runs in the Burrow family. While Rob raced around a rugby pitch, his sisters took ballroom and Latin dance classes from the age of eight. Claire stopped aged 30 but Jo competed at a national level for several more years.

`I danced with Lindsey as a partner in classes,’ says Jo. `We had a presentation evening one time and that is when Rob first met his future wife - they were aged about 14. I don’t think he ever looked at another girl.’

Later, the proud family watched Rob play for England and Great Britain, and of course his beloved Leeds Rhinos club.

Rob was 18 when he donned a Rhinos shirt for the first time, a ‘dream come true’ for dad Geoff.

In the months following his diagnosis, the disease was quite slow to progress, with mainly his speech affected.

He began using a wheelchair around nine months later, when he also stopped driving.

Rob lost his speech fully within a year and now uses high-tech eyegaze adaptation to communicate - he looks at a letter and then types up the words, which he then sends to a machine which creates a synthetic voice that sounds like him. It realistically creates the voice by combining a number of phrases using his previous interviews. 

It can be a laborious process, but the family say it gives Rob a voice and ‘some independence’.

Jo says: `It’s fight or flight, and we Burrows are fighters. This has made us stronger, closer than ever. I don’t take anything for granted now and appreciate life much more.’

This brutal disease may have ravaged Rob’s once athletic body, stolen his speech, ability to walk, talk or feed himself - but his smile is as wide and his brain as agile as ever as he continues to raise awareness and funds to treat and cure MND.

As the trio joke around at Jo’s house, she says: ‘We still have banter and a laugh with Rob using his eyegaze machine - we still don’t let him get away with much!’

At the height of Rob’s career Rob’s Leeds Rhinos were a formidable fighting force; strength in unity as they as they took on mighty opposition forces. And team Burrow have shown themselves to be equally formidable over the past four years.

Unwilling to be defeated by MND, Rob went public with his illness just ten days after his diagnosis. Thanks to his epic campaigning alongside ex-Rhinos skipper Sinfield, 43 - who ran seven consecutive ultra-marathons in seven cities last year (Rob’s shirt number was seven) - Rob has to date raised more than £8million for MND charities and built a new centre for fellow sufferers in Leeds.

Rob’s sisters were unsurprised that Rob completed the inaugural Leeds Marathon - named in his honour - in his specially adapted wheelchair, despite it taking a gruelling toll on his body. 

His next fundraising initiative is a Strictly-style ball with ten celebrities including Manchester Mayor Andy Burnham and TV presenter Sam Nixon taking part. BBC’s Sally Nugent and Helen Skelton will be hosting the event in Blackpool on April 20, which Jo and Claire hope will raise £100,000 for the MND Centre in Leeds, the MND Association and the Rob Burrow Discretionary Trust.

Claire says: ‘He was always running with a ball - for as long as we can remember. ‘He’s mentally picked up the ball and continued to run, to chase that next goal - only this time it is not on a pitch but in a wheelchair and his opposition is MND.’

Claire adds: `It puts things in perspective. Rob has made his illness and its symptoms well known nationally. Is this what he was meant to do, I’ve asked myself? His legacy in this area will outshine his sporting achievements and will impact future generations.’