RUGBY league hero Rob Burrow spent four years battling motor neurone disease while courageously raising awareness of the condition and more than £20million for charity.
Yesterday, in an exclusive interview with The Sun, his widow Lindsey told how she and kids Macy, 13, Maya, nine, and six-year-old Jackson, made forever memories with the Leeds Rhino player in his last hours.
Today, in extracts from her new book, Take Care, Lindsey recalls the dark days after Rob’s death, and how moving it was as thousands turned out to pay respects.
Thursday 12 December 2019
This was the day our lives were blown apart. We had just moved into our dream home in Pontefract and life seemed perfect.
Macy was eight and dreamed of playing the lead in a West End musical while Maya, just four, fancied becoming a movie star. Jackson was about to turn one.
I knew Rob secretly hoped Jackson would follow him into rugby league and play for Leeds Rhinos.
Rob played almost 500 games for Leeds and won eight Super League Grand Finals and 18 international caps before retiring after a winning Grand Final in 2017 and taking up a coaching job.
We had an appointment at the Nuffield Hospital in Leeds with neurologist Dr Jeremy Cosgrove after Rob began slurring words. He had been exhausted for a few months and his mum Irene and former teammates had also noticed a slur in his speech.
‘Honesty of a child’
I became acutely aware of Rob’s speech problem when I heard how hard it was for him to say the word “solicitor” while buying our home.
Of course, I knew Rob wasn’t indestructible. I had seen him take brutal knocks over the course of his career, saw the impact on his body, and it was a relief when he played his last game.
But he was a little superman. When he held me close and told me everything would be all right, it was easy to believe him.
He was convinced the occasional slurs in his speech were a side effect of painkillers he was taking to cope with an old shoulder injury.
As we walked into Dr Cosgrove’s office, I noticed he’d been joined by a nurse. He looked steadily at Rob, maintaining eye contact, and told Rob he believed he had motor neurone disease.
Rob looked at him blankly because he had no idea of the severity of this sentence.
It was very different for me. As soon as I heard the words “motor neurone disease”, it was as if a bomb had fallen from the sky and blown me apart. I knew our glorious life together was over.
I found it difficult to look at Rob, the man I loved, because I understood what it meant. Rob would be buried alive in his own body. He would be trapped and paralysed beneath the rubble of MND.
Soon, he would no longer be able to dress or feed himself or go to the toilet on his own. Even while his brain remained alert, a time would come when he could no longer talk or move.
He would eventually struggle to breathe and swallow. An oxygen mask and intravenous feeding tube would be the only ways to keep him alive — if such an existence can be called a life.
On the walk to our car, Rob put his arm around me and said: “Thank God it’s me and not you or the children.” He didn’t say: “Why me?” There was no pity.
On the way home, Rob hit the speaker-phone button to call his parents Geoff and Irene.
Geoff, in particular, had such pride in the way his tiny son ripped up presumptions that he could never become a professional rugby league player.
The shock in Geoff’s voice at the devastating news filled the car. We heard him talking to Irene and she started crying. Geoff was so distraught it sounded as if he had collapsed.
Rob’s sister Claire came on the line and he told them everything was going to be OK. We then focused on the children and agreed we would not say anything to them until a few days after Jackson’s birthday party on Saturday.
What is motor neurone disease?
MOTOR neurone disease (MND) is a rare condition that affects the brain and nerves, according to the NHS.
It causes weakness that gets worse over time, and there is currently no cure for MND.
Up to 5,000 adults in the UK are affected by the condition, with one in 300 at risk during their lifetimes, data from Brain Tumour Research states.
It slowly robs patients of the ability to walk, talk and eat, although every sufferer is different.
Celebrities who have been diagnosed with the condition include English rugby league player Rob Burrow and the former Bradford City footballer Stephen Darby, both of whom had to retire from their sporting careers early.
Many people associate motor neurone disease (MND) with the scientist Stephen Hawking, who lived with the condition for more than 50 years.
There are many form of MND, which is an umbrella term. Some have a life expectancy of just a few months, while other forms of the disease don’t affect lifespan.
It is usually diagnosed in people over the age of 50, and men are at more risk than women. But many people outside of this are affected.
Monday 15 December 2019
Christmas was coming and we faced the horrible challenge of picking the right time to explain to the children that their dad would soon need special care.
Jackson, having just turned one, was too young to be included in our chat. But I called the girls’ school to explain our situation and the assistant headteacher gave me some pointers on how to talk to Macy and Maya.
Soon after they had demolished their tea, Rob and I sat down with Macy and Maya. We spoke as sensitively and thoughtfully as we could.
The girls listened quietly and then Maya piped up, saying: “Why are you telling us all this? It’s boring. Can we watch some TV?”
We couldn’t help but laugh. Her innocence, delivered with the blunt honesty of a child, wiped away our anxiety and dread.
I hugged her tight, and Macy too, and allowed them to turn on the television. Macy, four years older than Maya, absorbed the news in a different way.
She didn’t say much at first but later came to find me with a serious question. “Mum,” she said, “is Daddy going to die?”
I tried to give her the answer she deserved. We sat down and I explained that her dad’s disease was serious and that, yes, he would eventually die.
But I stressed that Rob and I believed this would not happen for many years. Her dad was a really determined person and would do all he could to look after himself.
“And Daddy’s got us, hasn’t he?” I said. “We’ll take special care of him, won’t we?”
Macy smiled, giving me a sudden burst of sunshine. “We will, Mum,” she said. “We really will.”
Sunday 7 July 2024
Today we say goodbye to Rob.
While we wait for the hearse I am anxious and can’t quite fulfil Rob’s example of living in the moment.
I desperately want the service to go well and do justice to Rob. Most of all, I am worried about the children.
I took them to the crematorium yesterday, as I felt it was important to show them what to expect and give the girls a chance to practise the eulogies they had prepared.
Macy and Maya look drawn and pale, while Jackson is just uncertain.
He clutches the worry worm that the nurses gave him the night before we lost Rob. It’s almost as if it will protect him because he now won’t leave home without it.
Maya always goes to bed with the knitted heart that she had placed in her dad’s hands in hospital, and sleeps with it under her pillow every night.
Macy, meanwhile, treasures the lock of her dad’s hair she had cut, so tenderly, before he slipped away. It is her most important keepsake.
For me, different memories help me through the pain. Of course, the more recent images in my head are sometimes harrowing, as I cared for Rob for years when he could no longer feed himself or go to the toilet. But I loved him beyond measure.
I had first gone out with Rob when we were 15 and we’d lived together for more than half of our 41 years of life.
There are so many snapshots of our sunlit joy in my head. Even death cannot dent, let alone erase, my love for Rob.
The funeral cortege crawls from our home in Pontefract to the local crematorium and thousands line the streets in Rob’s honour.
They wear rugby shirts of all colours, people step forward and touch the hearse, or leave flowers on it. Others stand and applaud with heartfelt warmth.
I feel choked up, seeing all these people. I remind the kids how their dad was admired and even adored but Macy speaks for all of us when, softly, she asks: “Why did it have to be my dad?’
It is beyond me to talk at the funeral but, somehow, here Maya and Macy are, willing to raise their young voices in honour of the father they have just lost.
A strange composure envelopes both girls.
Maya looks up at us. Her voice rings out, clearly and beautifully: ‘Thank you, everyone, for joining us to celebrate the life of our amazing dad.”
Macy talks about how her dad was the children’s “number one fan,” who “always had a smile on his face, especially when listening to Michael Jackson, drinking caffeine or watching the NFL”.
She continues: “Thank you for being our dad and looking after us.
You are without doubt the most bravest, loved dad in the whole world. I hope I grow up to be like you.”
Maya’s voice also fills the crematorium with love as she tells her dad how much he meant to her, adding: “We know that you will be with us every step of the way.
“Daddy, you will continue to inspire us every day and we will do our best to always make you proud. You’ll always have a special place in my heart.”
Later, I think back to how Rob fought so bravely against MND, inspiring millions of people, from the day he was first diagnosed.
- Adapted by Grace Macaskill from Take Care: A Memoir of Love, Family & Never Giving Up by Lindsey Burrow, published by Century on February 27, £22. ©Lindsey Burrow 2025
