Consistency.

Just one word.

That is where it all started.  

While presenting an award, Leeds Rhinos rugby player, Rob Burrow, could not say the word consistency. He did not drink alcohol and he certainly was not on any drugs like people assumed. This was his first sign.  

Weeks passed and Rob felt increasingly fatigued. He was often slurring his speech and his arms had started twitching.  

In his autobiography, he writes about the embarrassment he felt when he could not pronounce the word solicitor, while he was on the phone to his solicitor. It was at this point that Rob and his family started to think his symptoms were caused by more than just stress. 

Headingly Stadium, the home of Leeds Rhinos, can hold 20,000 people – and statistically this means that 66 of those will be diagnosed with MND at some point in their life. For many people, the term MND does not mean anything to them, it may be assumed to be another slang term used by the new generation. However, for over 1,100 people every year, it becomes their new reality.  

I’m not trying to portray myself as a hero.

Rob Burrow

This is the case for Rob Burrow, who on December 12, 2019, was diagnosed with Motor Neurone Disease. He was only 37 years old.

MND gradually prevents messages from our motor neurones reaching muscles throughout the body, resulting in muscles weakening, stiffening, and eventually wasting away. Currently there is no cure, only a drug called Riluzole which slightly slows down the progression of the disease and can increase life expectancy by two to three months. 

The Motor Neuron Disease Association is the only national charity in the UK which is solely based on beating MND. For over 40 years the charity has been researching the disease and searching for a cure. MND is treatable so the charity therefore believes that there must be a cure. Alongside this work, they have 22 care networks across the country which offer support and care for sufferers of MND, and their families. 

Rob Burrow is a huge name in rugby league, which is remarkable given that he spent a career playing against giants that towered over his 5ft 5ins frame. Ever since Rob began playing rugby, he defied all the odds, something which he continues to do in his battle with MND.

“Since his diagnosis with MND, Rob Burrow’s commitment to rugby league has been mirrored by his commitment to raising awareness of this brutal disease,” a spokesperson for the MND Association said.

He has inspired so many people by sharing his own journey.

MND Association

After his diagnosis, Rob was given one or two years to live.  

Over two years later he attended Windsor Castle where he received an MBE for his services to rugby and creating awareness of motor neurone disease during the Covid-19 pandemic.  

By choosing to publicly share his journey, Rob has created huge awareness of the disease as well as the MND Association. Even though the pandemic was a huge obstacle, Rob and his family and friends have been doing whatever they can to raise money for MND and create awareness.  

In October 2020, “Rob Burrow: My Year with MND” aired on the BBC. The documentary was an opportunity for Rob and his family to spread awareness of MND and the heart-breaking effects which follow a diagnosis. The documentary showed how rapidly Rob has – and continues to – deteriorate.  

Photo: Instagram @mndassoc

In January 2020, just a month after his diagnosis, Rob played in a charity rugby match against Bradford Bulls which raised over £70,000 in donations. Leeds Rhinos were victorious and on this day, so was Rob’s fight with MND. Instead of giving up and submitting to this awful disease, Rob has chosen to fight it with everything he has.  

There is no expectation that Rob will miraculously recover. He cannot. There is no cure. Playing rugby, putting his shoes on, or changing the channel on the television. These are easy, daily tasks for us but for those living with MND, they are huge victories over the disease. Rob is trying to do whatever he can, while he still can.  

The love and support which has been shown to Rob since his diagnosis has truly been remarkable, but his former Leeds Rinos teammate and friend Kevin Sinfield has gone above and beyond to raise money in Rob’s name. His first challenge in 2020 saw him run seven marathons in seven days and he raised a staggering £2,243,375.

No regrets, I wouldn’t change a thing.

Rob Burrow

In 2021, he decided to go the extra mile and run 101 miles in just 24 hours, which saw him raise a further £1,300,000 in honour of Rob and all the other families affected by MND.  

Photo: Instagram @mndassoc

Alongside raising money for the MND association, Rob and his family have decided to go one step further and raise funds towards the building of a bespoke MND centre in Leeds. At the new MND centre all a patients’ needs will be catered for in one building. Patients will have access to support which is uniquely tailored to their needs from speech therapy to physiotherapy, depending on their type of MND. The main aim for the centre is that it will help give those living with MND the best quality of life as possible. Overall, £5m is needed for the Rob Burrow Centre for MND to be built.  

One of the most recent fundraising events was the Burrow Strictly Ball. The star-studded event held at Headingly Stadium took place on the 19^th of March, with the hopes of raising £100,000 towards the Rob Burrow Centre for MND appeal.  

The ball had everyone in attendance from politicians to athletes to presenters. Just like Strictly Come Dancing, celebrities were partnered up and given a dance to learn and perform on the night.  

Many celebrities supported the event all in their own unique ways. Comedian John Richardson, BBC Breakfast presenter Dan Walker and fellow Strictly contestant and actor, Kelvin Fletcher were all adjudicators on the night. Strictly Come Dancing professionals, Nadiya Bychkova, Kai Warrington, and Katya Jones attended and showed huge support of the event across all their social media platforms. BBC Look North’s Tanya Arnold and Danika Priim from the Leeds Rhinos ladies’ team were both comperes for the night and Charles Hanson from BBC’s Bargain Hunt hosted a live auction at the event.  

The celebrities who volunteered to dance at the event had a wide range of backgrounds. Athletes such as Leeds Rhinos legend Barrie McDermott, English football coach and former player Brian Deane and the ‘Welsh wizard’ himself Iestyn Harris. Dr Amir Khan, NHS doctor, author, and columnist danced at the event as well as Shadow Home Secretary, Yvette Cooper, alongside her husband Ed Balls. Emmerdale actors, Adele Silva, best known for playing Kelly Windsor and Natalie Anderson, also known as Alicia Metcalfe, as well as Line of Duty star Nigel Boyle danced at the event. BBC presenters Luxmy Gopal and Sally Nugent were also in attendance.  

The amount of people who attended, participated and supported this event just goes to show how inspiring Rob Burrow is and how successfully he has created awareness of Motor Neurone Disease.

The MND Association said: “He has inspired so many people by sharing his own journey just as he did on the pitch. The awareness, funds and support that have been raised as a result will continue to resonate through the MND community and the work that the MND association does. We are incredibly proud to have Rob as a patron of the MND Association and incredibly grateful for his ongoing support.”  

Rob is still fighting, even though he has lost the ability to walk and talk, it is not stopping him from being there for his three young children, Macy, Maya, and Jackson.

When asked if he had any regrets while writing his autobiography, Rob said: “I hit a rough patch, that’s all. It hasn’t been ideal, I’ll give you that.

“But MND isn’t the worst thing in the world. I’m not trying to portray myself as a hero, but I’m glad I got it rather than my beautiful wife and kids. And what a lucky life I’ve had overall. No regrets, I wouldn’t change a thing.” 

Rob has always said since being diagnosed with MND: “There’s too many reasons to live.” 

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Since this article was written over £5m has been raised to build the Rob Burrow Centre for Motor Neurone Disease and final designs have just been published.