My hero husband Rob Burrow came back from the dead so we could say one final goodbye – it was a miracle
LINDSEY BURROW spent four years caring for her rugby hero husband Rob as he valiantly fought motor neurone disease.
The Leeds Rhinos star courageously raised awareness of the degenerative condition and helped collect more than £20million for MND charities and research.
In an exclusive interview with The Sun, Lindsey told how she and children Macy, 13, Maya, nine, and six-year-old Jackson made everlasting memories in Rob’s final hours.
Today, Lindsey, 42, describes in her own words from her new book, Take Care, how Rob came back from the brink to say goodbye to his family.
She also tells how his rugby friends helped him through his illness after his diagnosis in December 2019, with England rugby kicking coach Kevin Sinfield helping Rob raise millions through a series of epic marathons.
More than £6.8million will go towards a new centre for MND sufferers in Leeds, named after Rob.
September 2019
ROB’S friend Kev Sinfield was among the first to guess something was seriously wrong with him.
He had noticed the star was slurring some of his words and, as director of rugby at Leeds, he arranged a meeting in his office.
“Look, Rob, what’s going on? I’m worried about you?”, asked Kev.
Rob eventually admitted he was stressed and struggling with an old shoulder injury and was sure the slur was down to the painkillers he was taking. Kev insisted Rob see the team doctor, which eventually led to the terrible news he had MND.
Sunday, January 5, 2020
WE met our neurologist Dr Agam Jung at Leeds General Infirmary.
She and a speech therapist said they couldn’t predict how much longer Rob would be able to talk coherently but said new technology could help him retain a voice.
A speech app would allow Rob to communicate by typing out a text, which could then be broadcast as an audio message.
A company called SpeakUnique could replicate Rob’s accent and intonation so that it would sound as if he was saying the words out loud.
The alternative was to use the standard metallic voice, which had become synonymous with Professor Stephen Hawking, the theoretical physicist who had lived with a slow-progressing form of MND for 55 years.
Rob grinned at the idea that he might end up with an “American robot voice”, but chose to bank his own voice by reading a short book out loud so the tech could capture it.
I don’t think Rob was too happy when it turned out to be The Tale Of Peter Rabbit.
Monday, March 23, 2020
BRITAIN shut down due to Covid and the then-Prime Minister Boris Johnson told people to stay at home.
We would obey but we were on our own. For those first weeks, we made the most of the chance to be with Macy, Maya and Jackson.
We spent brilliant days in the garden, playing with the kids. Rob was still a hands-on dad and he and the girls built obstacle courses for them to climb over.
At night we spoke to our parents on the phone and organised extended family quizzes and games on Zoom.
I remember lots of laughter from those first months of lockdown.
It was only later that I understood that Rob had been struggling internally. He was usually the most quick-witted and funniest of us all, but while the quips flew back and forth, Rob was quieter than normal.
I thought he was just tired but, in truth, he was floundering. He could think of rapier-like responses to all the wisecracks; but it felt impossible to turn the jokes he saw in his head into words we could all hear.
I found his words comforting because it meant that Rob was free of any bitterness and resentment.
Lindsey
His speech started to fade fast.
The months passed. I noticed Rob was losing weight and his movement was increasingly compromised.
When the UK started to open up again in May, Kev would drive across to Pontefract every two weeks. Barrie McDermott was another frequent visitor and sometimes arranged for a few other Rhinos to join him in a socially distanced outdoor gathering.
They shared so much laughter on those summer afternoons.
But they had plenty of serious conversations as they discussed the state of the game and the fact that some players across both codes of rugby had taken the legal route with regard to concussion injuries.
Rob, typing his words into the app, said: “If playing rugby league has given me MND, then so be it. I would not swap it for anything.”
I found his words comforting because it meant that Rob was free of any bitterness and resentment.
Tuesday, May 28, 2024
ROB was admitted to hospital after developing a temperature.
We knew that there was a lot of public interest around Rob, and at Pinderfields Hospital in Wakefield, we were asked to give a password to keep everyone out except close friends and family.
We pick the word hero.
Thursday, May 30, 2024
AS I sat in the corner of Rob’s hospital room with Jackson, watching Ghostbusters together on a little DVD player, my husband suddenly started to struggle to breathe.
Doctors and nurses rushed in as his oxygen levels and heart rate took a dive. We expected to lose him, and a consultant advised us to say goodbye.
I couldn’t quite believe it.
Except, being Rob Burrow, he rallies again, giving us time to make special memories.
Two sets of blood tests had been assessed that the doctors said showed Rob had come through something called Lazarus syndrome.
I didn’t understand it at first but, then, it sounded miraculous.
It occurs when blood circulation returns spontaneously after the heart stops beating. The blood tests told us that, just after lunchtime, Rob had basically come back from the dead.
May 30, 2024 – evening
KEV Sinfield had been on edge since Rob had been taken into hospital.
He came to see him hours after our scare. Kev is such a respectful and serious person but he instantly found the right tone, joking with Rob about rallying and him growing a moustache under his oxygen mask.
Kev had been through hell to raise money for Rob and MND research and charities, including the new MND unit at Leeds in Rob’s name, which will be a one-stop centre for sufferers.
He set himself his first challenge — to run seven marathons in seven days with the aim of raising £77,777 for Rob. Of course, seven was Rob’s shirt number at Leeds Rhinos.
In November 2021, he ran 101 miles in 24 hours and a year later undertook seven ultra- marathons in seven days.
Barrie told Rob he loved him and that he would see him later. Sadly, it wasn’t to be.
Lindsey
Behind the scenes, he talked to sufferers over Zoom, giving them emotional sustenance.
In May 2023, Kev ran the Leeds Marathon before scooping up Rob in his arms and finishing the last ten metres together.
A photograph of that moment would circulate on social media and eventually make headlines.
Rob spoke the truth when he once told a TV channel: “Everyone needs a friend like Kev.”
At Pinderfields, Kev gave Rob a cuddle as he gently ribbed him.
Beneath the gentle humour, Kev knew it was time to say goodbye when Rob began to look exhausted.
Kev leaned down to kiss Rob on his damp forehead.
“I love you pal,” he said. Then Kev slowly turned away.
He knew he would never see Rob again.
Friday, May 31, 2024
BARRIE McDermott, Kev’s friend of 25 years, came to visit.
Unlike Kev, who realised we were down to the last days, Barrie had seen Rob rise up against all the odds in his rugby career and thought he would rally again.
The great big prop forward kissed Rob on his forehead — just as Kev had done 12 hours earlier.
Barrie told Rob he loved him and that he would see him later. Sadly, it wasn’t to be.
DODDIE'S LESSONS IN LOVE
Thursday, December 12, 2019
THE day Rob was diagnosed, Kev Sinfield sent a text asking how the consultation had been.
Rob was still reeling and his reply was brief: “I’ve got MND.”
Kev contacted a close friend of Doddie Weir, the legendary Scottish rugby union player who had been diagnosed with MND in 2016. After watching a documentary about Doddie’s battle, Rob decided he would like to meet him.
Wednesday, December 18, 2019
ROB was really nervous when Kev picked him up for the meeting with Doddie.
He needn’t have worried.
Doddie began by laying out some of the simple lessons MND had taught him. He told Rob how much he now valued life — and all the people that mattered most to him — more than ever.
He told Rob about his deterioration and how dependent he had become on his wife Kathy.
Doddie made Rob laugh as he showed him how to use a variety of aids. Most of all, Doddie encouraged Rob not to surrender to the ravages of the disease.
Doddie, whose nickname was the Mad Giraffe, gave Rob a wink at the end of their meeting, telling him: “You’re going to be all right, wee man. I can tell.”
Sadly Doddie died from MND in 2022 after a courageous fight.
Thursday, December 19, 2019
THE meeting with Doddie was a turning point.
Doddie had been diagnosed with MND in December 2016 and doctors said he wouldn’t be able to walk by the following Christmas. But he still had a snap to his step when Rob met him.
We decided we would accept the diagnosis but fight the prognosis. Then Rob said something that has stuck with me and became our mantra.
He looked at me intently and said: “Lindsey, we need to have no more tears. That’s going to be our policy from now on, darling.”
Sunday, June 2, 2024
THE children and I were led into a room. The palliative care consultant was waiting for us and I knew what she was about to say — that it was time to turn Rob’s machine off.
The children understood and they wanted to see Rob.
We were all crying and Maya and Macy echoed each other telling Rob how much they loved him.
Rob was given morphine as his machine was discreetly switched off and his mask was removed.
He looked peaceful, with his eyes closed and his breathing slow and steady.
The kids watched videos and played with my phone as Rob’s sister Joanne fell asleep in the chair and we laughed as Maya took pictures of her. Rob’s other sister Claire and mum and dad Geoff and Irene were also with us.
I kept my eyes on Rob’s chest and watched it rise and slowly fall. The room was full of love.
It was just after 2pm when I noticed Rob’s chest was no longer moving. He looked serene.
FULL OF LOVE
I turned to the nurse and asked if he’d passed.
When she said yes, I turned to the children and opened my arms which they filled as I held them close.
They started to cry but they also did something beautiful. They opened Rob’s hands. His fingers were still painted red and yellow and green from where they’d used ink pads to take imprints of them hours earlier.
They took turns to pour little knitted hearts the nurses had given them on to Rob’s upturned palms, then they closed his hands around their hearts.
I know we will carry Rob, their dad, with us forever.
- Adapted by Grace Macaskill from Take Care: A Memoir Of Love, Family & Never Giving Up by Lindsey Burrow, published by Century on February 27 at £22. Copyright © Lindsey Burrow 2025.