Remembering Rob Burrow
As I rush around cooking tea or getting our three children ready for clubs after I’ve come in from work, my husband, Rob, asks how my day has been.
It’s such a normal exchange between a husband and wife that it’s hard to believe that the words haven’t come from his own mouth. Rob has motor neurone disease (MND) and he now uses his eyes to speak through a special computer. It uses recordings of his voice that were saved before he lost the ability to talk.
As our children, Macy, 11, Maya, eight, and Jackson, five, tumble through the door after school, he’ll always ask them how they are, too. He tells them he loves them before they’ve even had time to race upstairs or ask for a snack.
I’m so grateful to still be able to hear Rob’s voice. It’s a reminder that, although his body is unrecognisable from his days as a star player for Leeds Rhinos and England, he’s still my Rob, the gentle, down-to-earth and funny lad I first met when I was a teenager. There’s never been anyone for me but him.
When I was growing up in Castleford, I used to go to dance classes with Rob’s sisters. He tells people he saw me at a dance show and later asked for my number. We went on our first date when we were 15, to the cinema to see the romcom Serendipity. Rob was wearing a leather jacket and looked like one of the T-Birds from Grease – although the jacket swamped his 5ft 5in frame and we always joke that it looked like he’d borrowed it from his dad, Geoff!
We’ve been together pretty much ever since. After his rugby league career took off when he was 17, I went to university in Manchester to study physiotherapy. We had a short break, but soon got back together. That time apart simply confirmed that he was ‘the one’.
We bought our first home, close to our parents in West Yorkshire, when I was still studying. By then, he was established in the Leeds Rhinos first team, and I went on to work as a physio in the NHS. When the children were born, we seemed to have a perfect life.
Just before Jackson’s first birthday in December 2019, Rob was referred to hospital by the club because of concerns he was slurring his speech. After tests, we were ushered into a room to be given the hammer blow that Rob had MND and would probably live less than two more years. At the time he was only 37.
I remember just wanting to get out of that room, to run away as far as possible. Through my work I had seen some patients with MND, so I knew something of the hard road that lay ahead. But in the car on the way home, Rob was calm. He said that he was glad it had happened to him and not me or the kids, and he insisted he was going to fight hard so he could live as long as possible.
The next few weeks were a blur. I remember going to the bank and forgetting my PIN, then breaking down in tears. The thing we dreaded most was telling the children. We said that Daddy had an illness called motor neurone disease and the doctors were doing everything they could. Later, Macy, who was seven, asked if Daddy was going to die. It was devastating to tell her that none of us were here for ever but, yes, Daddy’s life was going to be cut short.
With MND, messages from the motor neurones in the brain gradually stop reaching the muscles, affecting how you walk, talk, eat, drink and breathe. At present, there’s no cure. Rob was very young to be diagnosed – it’s more likely to affect people over 50, and men are twice as likely to get it as women.
The turning point for us came just a few weeks after the diagnosis. Rob went with his best friend, Kevin Sinfield, who had been his captain at Leeds Rhinos, to see Doddie Weir, the Scottish rugby union player who had MND. Doddie was doing an incredible job raising funds for research. Doddie died in November 2022, and his attitude was an inspiration to Rob. From then on, Rob told us there would be no more tears.
Sticking to that has not always been easy, but if Rob can be so positive with all that he’s going through, then the rest of us can, too. It would be different if Rob, understandably, felt sorry for himself, but he doesn’t. He just gets on with things as best he can.
Until his diagnosis we were very much a private family, but he quickly went public about having the illness. He was angry and frustrated that there’s no cure and felt it was his job to raise awareness, find answers and help other people. He was incredibly brave to open up to the world at his most vulnerable.
Being together as a family drives Rob. Of course, we want to make special memories, like going to Disneyland Paris in 2022, but it’s the everyday things we love the most – snuggling up together to watch Strictly Come Dancing or going to see the girls dance.
Rob has always said he wants to keep things as normal as possible, so that’s what we try to do. He is still as much a part of our family as he always was.
I know he misses reading the children stories or kicking a ball about with Jackson, but we involve him in everything we do. He has been in a wheelchair – unable to walk – for the past two years, and relies on me for every aspect of his personal care. It means I don’t have time to reflect on the reality of the situation, which I see as a good thing. Dwelling too much might take me to a dark and lonely place. We made those vows, in sickness and in health, and I know that he would do the same for me if things were the other way around.
In some ways it has deepened our love and that bond powers us through the darkest times. Rob is still the same man I married – he’s just Rob with MND. He still has a sparkle in his eye and can still give me a look or a wink and take the mickey out of me. I often know what he’s thinking without him having to say a word. I always give Rob a kiss when he goes to bed and tell him I love him and he’s still the man I fell in love with, but there’s no doubt my role has changed. Now I’m his carer as well as his wife. Although we have still been on date nights, to a restaurant or the cinema, that is a lot harder now. The most special times are when we’re a family.
Four years on, millions of pounds have been raised in Rob’s name for MND awareness and to build an MND care centre, named after Rob, in Leeds. Much of it has been raised by Kevin, who has been a true friend to both of us. He’s taken on various challenges to raise awareness, including running seven ultra marathons in seven days.
It was Kevin who pushed Rob along the route of the Rob Burrow Leeds Marathon, back in May, held to celebrate friendship and raise awareness about MND. Just before the finish line, Kevin picked up Rob in his arms, gave him a kiss, and carried him to the end. Captured on TV cameras, it went viral, a public display of the true meaning of friendship.
I didn’t actually see it myself as I was running the marathon, too. A lot of people thought I was mad, but the early morning and late-night training runs gave me some headspace, precious time when I wasn’t being a carer or a mum. Doing it for Rob inspired me, and I finished around 40 minutes after Rob and Kevin. The two of them first met playing rugby as young boys and their friendship has remained a constant.
They have now penned a gift book together, With You Every Step: A Celebration Of Friendship, which champions the special relationship that friends have.
For both Rob and me, the kindness of others has been so important. Whether it’s my school friends or people we’ve met along the way, there’s an army that has stood with us. Without them, we’d be in a very lonely place.
But, ultimately, Rob is my best friend. There was never going to be anyone else for me but him. We’ve been childhood sweethearts, grown up together and gone through both good and bad times. He always had my back and now I have his.
With You Every Step: A Celebration Of Friendship (Pan Macmillan) by Rob Burrow and Kevin Sinfield is out now. For every copy sold, 50p will be split equally between the MND Association and Leeds Hospitals Charity
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