Rob Burrow's sisters open up for the first time about his battle with Motor Neurone Disease

The close-knit trio were raised by devoted parents, Geoff and Irene in Castleford, West Yorkshire, and the sisters laughingly recall how they use to mother and boss about the GB and Leeds Rhinos scrum half.

But they also speak movingly of the day dad-of-three Rob, 41, wed to teenage sweetheart Lindsey, 40, was told he had the rare life-limiting degenerative disease, Motor Neurone Disease. "Rob phoned mum and dad and I saw the colour drain from dad’s face, he went white. ‘Oh no,’ he kept saying,” says Jo.

“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 to mum and dad’s. 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.’ I’d researched his symptoms and MND had been flagged up so I felt I was a bit prepared.”

But legal secretary Claire, wed to lawyer Michael, 53, admits she was in 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.

“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.”

MND mainly affects people in their 60s and 70s, but it can affect adults of all ages. It is 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.

It is not curable - yet - but medication can delay death.

Rob was given the devastating news in December 2019 and told he may live one to two years. Daughters Macy, and Maya were seven and four while son Jackson was just a baby then.

His family and close friends had, in the preceding months, noticed his speech was occasionally slurred and he could not pronounce certain words. “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,” says Jo.

The sisters say they soon adopted the same attitude to Rob’s illness as he and Lindsey have. “A few hours after the diagnosis, Rob and Lindsey were at home and they messaged us all,” says Claire.

“They said they have digested the news and decided they are going to carry on as normal and we are going to have a no tears policy.”

Jo adds: “It eased my mind. We thought if they can do that then we do 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. It’s inspiring to see mum care for Rob while dad scours the internet for treatments and developments 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.”

Fortitude seeps through the family’s veins. Geoff has a four word policy - I Can. I Will - he drills into his children. It is down to Geoff that he found out about trial drugs in America for MND patients and campaigns now for the drugs to be made widely available to all UK sufferers.

Rob has lived more than double the expectancy he was given. “That’s down to his courage, spirit and the medication,” says Jo.

Jo says their lives have 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. 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. The 5ft 5ins sportsman was often dubbed the smallest man in super league but his running speed and agility made him one of the most successful players in the competition’s history, winning eight championships, two Challenge cup finals.

His first half try in the 2011 Super League Grand Final was a 50-metre solo effort and is considered one of the greatest tries in Grand Final history.

After hanging up his boots, Rob enjoyed coaching the Rhinos under-16s and being a dad. “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.”

But Rob showed the courage he displayed on the field as he tackled MND. Going public just 10 days after his diagnosis, he has raised the profile of the illness that six people a day are diagnosed with and six people a day die from.

Along with his best pal and ex Rhinos skipper, Kevin Sinfield, 43, they have touched the nation’s hearts with their obvious brotherly love for each other as Kevin has run numerous marathons. Rob’s shirt number was seven and Kevin ran seven marathons in seven days in 2023. In total, his superhuman efforts have raised over £8million in the past four years for MND charities and a new centre in Leeds for fellow sufferers which will be named after Rob.

The duo touched the nation’s hearts when in May 2023 at the finishing line of the inaugural Rob Burrow Marathon in Leeds, Sinfield carefully lifted Rob out of his chair and carried him across the line. It was a powerful image that became iconic across the globe.

Rob recalls Kevin said: “You’re not going to beat me, Rob, we are finishing together. He then kissed me on the cheek and told me he loved me. It was a day in a million. It felt like scoring in a Grand Final again.”

Modest Kevin simply said it was friends finishing together, mates helping a mate.

But mischievous Rob later quipped: “Kevin joked he didn’t want me to beat him by crossing the line (in my chair) first. I think he knew I had a cunning plan to claim that I finished before him.”

Rob’s sisters were unsurprised he completed the marathon in his chair, despite it taking a gruelling toll in the ensuing days.

“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,” says Claire.

The sisters laugh as they both say: “He was always running with a ball - for as long as we can remember.”

Jo, eight years older, says from being a baby Rob was usually dressed in blue and yellow clothes - the colours of Leeds-born Geoff’s beloved Rhinos team. “As a toddler, he had a knitted hat in the team colours too.

“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, “says married mother-of-two Jo.

Claire says she 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.

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

As oldest sibling Jo grew into a teenager, she rallied the younger two into playing schools. “She was always the teacher,” recalls Claire. “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 laughs and 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.”

Fancying herself as mining town Castleford’s answer to Madonna, Jo 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’d have my lace gloves on and rocking the look of Madonna Yorkshire teen style as I belted out her songs and danced away.

“I was in full flow one show when Rob, aged 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 brother ramped up a notch when for the first time, Jo brought home her future husband Paul, now 50 and a plant manager.

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

Being fleet-footed runs - no puns intended - in the Burrow family. While Rob raced around a rugby pitch, his sisters took ballroom and Latin dance classes from being aged eight. Claire stopped aged 30 but Jo competed at a national level for 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.”

And so it is appropriate the sisters are organising a Burrow Strictly Ballroom MND fund raising event at the dance capital of ballroom - Blackpool’s Winter Gardens on 20 April.

Ten celebrities will take to the floor to compete for a glitter ball trophy. It will be hosted by Helen Skelton and BBC’s Sally Nugent and Gethin Jones alongside Channel 5’s Dan Walker.

Rob, the sisters happily admit, was the golden boy in the close-knit family. They all watched his games, were pride-filled when he played for England and Great Britain, and remained loyal to his beloved Leeds Rhinos club.

The late summer before his December 2019 diagnosis, they began to pick up on his weight loss, slurring of speech but dismissed that as him not training as much following retirement.

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

Today, the family take life one day at a time. Jo says they shore her beloved parents up while they help care for Rob alongside NHS physiotherapist Lindsey: “It’s fight or flight and we Burrows are fighters and this has made us stronger, closer than ever. I don’t take anything for granted now and appreciate life much more.”

Claire adds: “It puts things in perspective. Rob has made his illness and its symptoms as well known as cancer. 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.”

Awarded the CBE for his services to raising awareness of MND, 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.

Leeds Rhinos, in Rob’s playing days, were a formidable fighting force - strength in unity as they as they took on mighty opposition forces.

Team Burrow though, have over the past four years, shown themselves to be equally formidable.

Fundraising evening

Rob Burrow’s sisters hope to raise £100,000 at a fundraising evening. Money raised will be equally split between the Leeds Hospitals Charity for the MND Centre, the MND Association and the Rob Burrow Discretionary Trust.

Centred around their love of dance, Burrow Strictly Ball will be held at Blackpool’s Winter Gardens on April 20.

Ten well known names, including Manchester Mayor Andy Burnham, TV presenter Sam Nixon, comedian Billy Pearce and ex-Real Housewife of Cheshire Leanne Brown are just some of the names taking to the floor.

BBC’s Sally Nugent and Helen Skelton will be among the hosts.

Tickets are no longer on sale but there is still an opportunity to bid on a host of raffle prizes that have been donated for the event, including a day at Huddersfield’s Titanic Spa, a family pass to Yorkshire Wildlife Park and entry to Doncaster Racecourse Ladies Day.