Just six weeks after the 37-year-old star was told he has motor neurone disease he and childhood sweetheart Lindsey are still coming to terms with the devastating diagnosis. But Lindsey, also 37, insists she has no intention of giving up hope that together they can stave off the effects of the degenerative disease while praying a cure can finally be found. She said: “He is my inspiration in all this. He is where I am getting my strength and together we will do everything humanly possible to make sure we can have as much time together as a family.
“Rob has been a tower of strength. I think it’s all testament to him because he is so positive, he is such a strong person. He has been an inspiration for me when I have been down.
“Of course he still drives me mad, he’s still messy, but it has made me appreciate everything we have together more. We have limited time so need to make the most of it.”
Rob said: “As a father and a husband all I want to do is make sure everything is going to be okay for them. You worry about what will happen when you are not here so that it my absolute priority.
“But in so many ways I am blessed. When I look at what has just happened to basketball star Kobe Bryant, we’ve got time left to make the most of things. How could you ever plan for something like that helicopter crash to happen in your life? Aside from the rugby family I’ve got so much love and support from family around me. Our parents all live near and we have so much support. From that point of view I’m the luckiest bloke alive.
“But I couldn’t get through this without Lindsey, we have been together forever and I’m afraid she’s stuck with me.”
Rob Burrow was diagnosed with Motor Neurone Disease at the end of last year
The couple, talking exclusively to the Daily Express, say they are aiming to carry on with life as normal for as long as possible and were given unexpected words of encouragement by eight-year-old daughter Macy on Monday evening.
Rob laughs as he recalls: “It was bathtime and she just looked at me and said ‘I love you Daddy, and I know you’ve got MND, I was sad at first. But at least it’s not as bad as cancer!”
On December 12 last year the Burrows had been planning to collect Macy and younger daughter Maya, four, from school, take them swimming and then head-out for a meal to celebrate their daddy being given the “all-clear” after what they believed was a routine medical check-up.
But instead their world came crashing down as a doctor delivered the bombshell that the Leeds Rhino’s legend was stricken by the disease which will decimate how the nerves in his brain and spinal column function. Worse he was told he could have as little as a year left to live.
Rob Burrow says he wants to do all he can to help his family
Having just moved into their dream home in Rob’s hometown of Pontefract with one-year-old son Jackson completing their family, Rob had embarked on a coaching career with his beloved Rhinos. The couple were as happy as they had ever been since falling for each other at the tender age of 14 when Lindsey was performing in a dance show alongside Rob’s sister.
They married in 2006 and had been enjoying a half-term to Florida last October when physiotherapist Lindsey first noticed her husband slurring a couple of words.
On return home he was attending an awards ceremony when he struggled to say the word “consistency”.
Former teammate Kevin Sinfield was so puzzled he asked his tea-total close friend if he had been drinking.
Rob, who at just 5ft 5ins is the smallest player to ever compete in Super League, put it down to the side-effects of painkillers he was taking for a shoulder injury or a viral infection but went to his GP to “make sure”.
Blood tests and a MRI scan all came back clear and the final check was on his nervous system.
As they waited for the appointment the couple began excitedly making plans for an evening out before everything descended into a blur.
Lindsey said: “There are no words that can describe how I felt at that moment – it was completely devastating. It doesn’t even start to explain how I felt but I was heartbroken. When you are told that the person you love has got a life limiting illness… we were not prepared for that at all. It was such a shock. I asked what the prognosis was and when he said one to two years I couldn’t speak, I was numb. Rob had to drive home.”
Lindsey reveals how they decided to tell the children before Christmas hoping that the subsequent festivities would prove a distraction.
She said: “We told them Daddy was poorly and there wasn’t a cure and Maya said, ‘what are you telling us this for, it’s boring!’. It was brilliant, just what we needed.
“Macy being older asked lots more questions and said, ‘I don’t want Daddy to die’. That’s the difficult emotional part for us to deal with.”
Rob, who retired from playing in 2017 after winning eight Super League titles, was initially frustrated at the lack of information he received from medics while self-research on the internet revealed only bad news.
But an appointment with Professor Christopher McDermott, a specialist neurologist, based in Sheffield earlier this month, revealed how statistics were skewed towards early death because most people diagnosed are aged in their late 50s and 60s and in poor health.
In contrast Rob remains an ultra-fit athlete who says he feels as “good as ever” with his slurred speech the only tell-tale sign of his illness.
He added “I could live 10 years plus, there is no reason why I can’t. The drug I’m on Riluzole gives you three months extra for every year you take it, so if I live 10 years that will give me 30 months longer. Ultimately the outcome will be the same but I’m determined to live long enough to see my children grow-up.”
Lindsey has this week returned to work doing part-time shifts in the NHS and at a private clinic but is looking forward to an upcoming trip to America with her husband to watch the SuperBowl final – their first ever time away from the kids.
“It just makes you appreciate more,” she added. “You live every day and things that before we might have thought ‘we’ll do that in the future’ you think well, let’s just do it. Time is precious. I know it’s a cliché but you just don’t know what is around the corner. I think our priority now is making happy memories.”
Rob says he is now determined to raise awareness for the disease alongside raising funds to secure his family’s future, with a sell-out testimonial earlier this month helping send a fundraising account established in his name rocketing over £300,000
He added: “I’m aware I have a public profile and all this support has been so overwhelming. You see a lot of bad stuff in the world but these past few weeks I’ve seen only the best of people. I now need to raise awareness of the disease to help people who are not as lucky. The postman or labourer who live alone and suddenly gets the same diagnosis – I need to help those people as well as myself and my own family.
“There is currently only one drug available and that has been around for 28 years. There must be more we can do!”