Rob Burrow’s courage and determination will not be broken ahead of Leeds return
ROB Burrow knew he would be living with a brutal illness after being left ‘disgusted’ at how he was left in the dark following his brutal motor neurone disease diagnosis.
The former Leeds Rhinos star is a beacon of hope and dignity after being told he has the incurable condition.
Robbed as his ability to talk, Burrow continues to raise awareness of MND, forming a trident of inspirational figures living with it alongside rugby union star Doddie Weir and footballer Stephen Darby.
Tonight sees the number seven return to Headingley as guest of honour for his club’s clash with Huddersfield.
And he revealed to SunSport just how he felt after being told he has MND, after initially thinking it may be something else.
Burrow said: “I was told by a specialist they were checking for something far less sinister, myasthenia gravis. It gave me false hope - the diagnosis came as a big shock.
“At first I was sent to see a specialist and he did specific tests such as checking my reflexes. He said he would send me for further tests.
“A week later, I was sent for some nerve conduction studies, where he stuck needles in me and checked my muscle strength.
“The final test was a brain scan, which came back fine which gave me more optimism.
“Finally, I had a meeting with the same neurologist who I had met originally. The disappointing thing other than the diagnosis was the lack of understanding.
“The consultant basically said there is no cure, get your affairs in order because you have one to two years left.
“I was disgusted how little information they had and the lack of empathy they had to the matter. In fact, we couldn't wait to get away from there.”
After being told it is MND – and essentially get ready – Burrow had to get his head around things.
He felt OK, recalled fellow pro Mike Gregory having it and even how he did the ice bucket challenge that raised awareness.
Main thing, though, was to make sure his family – particularly wife Lindsey and children Macy, Maya and Jackson – were OK.
He added: “My first thought was, ‘Have they got it wrong because I felt so good?’ The second thought was, ‘Thank goodness it was me and not anyone else in my family.’
“Lindsey was with me at my diagnosis and tried to ask questions but they didn't have answers.
“While it is me that has the disease, it can't not affect the whole family. Lindsey has always been amazing to me but now she is my full-time carer.
“Her life will never be the same again. It affects her in a more demanding way. It is heartbreaking to see her not to have a minute to herself.
“We sat the kids down and we told them daddy was poorly and everyone was helping.
“Macy, our eldest and the most sensitive, asked the question, ‘Will daddy die soon?’ to which we replied, ‘Everyone will die one day.’
“Maya, the character of the family, replied, ‘What are you telling us that for? That is boring,’ which was perfect, that changed the mood completely.
“They give me incentive every day. Along with my wife, what more reason to be here? While ever I've got them to see grow up, I will never give in.”
Burrow is being helped by parents Geoff and Irene as he spends two days a week with them to help Lindsey work and just have time off.
Conversing through an eye tracking device, the spirit that made him such a thorn in opponents’ sides is still there.
He has not had many alterations done to his house and insists, ‘I feel really good in myself,’ as he takes cancer drug interleukin-2 to combat the inflammation in his body, while also trying a voltage suit, which has worked wonders with cerebral palsy sufferers, and using an infrared biomodulator twice a week.
His story is told in autobiography Too Many Reasons To Live, which he was convinced to do by his dad Geoff and is watching rugby league after forgetting what is used to be like as a player.
The 38-year-old told SunSport: “I'm reluctant to get anything before I need it because once you're reliant, there is no turning back.
“If for example I got a stairlift, I would stop getting up the stairs with my wife's help. I think I've made it clear that I am not backing down easily.
“When I see rugby league being played, I do think, ‘How could I have done that for so long especially in my current situation?’ I forgot what it is like to be mobile, despite that being the best facet of my game.“I've seen rugby league come together when one of their own is down. It is when the sport is at its best. I've been blown away by the response of my sport and it makes it the best sport in the world.
“I know it won't be an overnight fix so I am in it for the long run but the day I stop doing stuff with help will be the day I die.”
*ROB Burrow's new memoir - Too Many Reasons To Live - is published today by Macmillan, priced £20 hardback.
