When Leeds Rhinos rugby hero Rob Burrow was diagnosed with motor neurone disease in 2019, he was only given 18 months to live.
His physiotherapist wife Lindsey immediately knew the implications of Rob’s bombshell diagnosis. “MND is a living death,” she says. But Rob was determined to make the most of every day that remained to him, and the family followed his lead, going on to enjoy five more precious years with the man Lindsey calls, “a tower of strength”.
In the end, he died surrounded by his family – Lindsey and their children Macy, 13, Maya, nine, and Jackson, six – in June 2024, aged 41.
“If I’m completely honest. I don’t know if it has fully hit me yet,” Lindsey Burrow says. “But it’s been a tough eight months since Rob’s passing. Simple things have been tough – coming home from work and expecting a message from Rob, or not having his machine say, ‘Can I have a coffee?’” says Lindsey. “Or asking the kids, ‘Have you had a good day?’”
MND is a neurological condition causing muscle weakness, impacting movement, breathing and swallowing. So, within months of diagnosis, Rob was wheelchair-bound and communicating via an audio speech app. Rob faced his diagnosis with characteristic determination and stoicism, and it’s that bravery that Lindsey is channelling as she tries to come to terms with her devastating loss, while supporting their three children through their own grief.
“Rob’s positivity rippled through the whole family. Had Rob approached it differently than I think it would’ve been a different story,” she tells The Express of his last gift to his family. It was Rob who encouraged Lindsey to tell their story in her memoir Take Care and she found the process cathartic. “It’s been very, very therapeutic. Talking about it really helped, it was part of the grieving process.”
But Take Care is also “a love story” that tells the tale of their romance. They were “childhood sweethearts” who met aged 14 when Lindsey attended dance classes with Rob’s older sisters. They got together a year later. When they married in 2006, Lindsey felt like “the luckiest girl in the world”.
“There are so many memories and I think that’s what keeps me going,” she says now. “The holidays that we’ve had, watching a movie together, having tea together, going to the park, watching the children swimming – that meant the most.
“For Rob and I, family was always at the heart of everything that we did. Life had been pretty perfect up to the point of his diagnosis. And we suddenly had two options. We could either sulk and question, ‘Why me?’ or we could make the most of life and enjoy the time we’d got together.”
Lindsey juggled her job with caring for Rob and raising their children, supported by both sets of parents. “I was so lucky to have been Rob’s wife and I felt really proud and privileged that I’d been able to care for him throughout his illness. There were times where you did question whether you were good enough. But I did the best that I could.”
Their children have been a source of comfort and inspiration to Lindsey throughout. “The kids kept the positivity… They just got on with life. They woke up in the morning with big smiles on their faces. And that really kept me going.
“Obviously they could see the physical deterioration in Rob, and they were brilliant in looking after him as well. They would bring him a drink or scratch his nose if he had an itch, they were very hands on.
“I feel so fortunate to have three beautiful children who keep me going. But my biggest worry is always the children, too. You worry about the long-term effects. But all I can do is just be their mum. They need lots of love and I’ll continue to do whatever I can to make sure they have happy childhoods. Making sure that they’re happy and looked after is definitely the priority now.
“I constantly question myself. Am I good enough? Am I saying the right things? Am I doing the right things? And I just hope I am because I’ve never had any training in this. I was on the internet researching how to talk to children [about grief]. Lindsey says that expressing grief is “something that I do struggle with… I was very much putting on a positive front”.
She welcomed advice from psychologist Julia Samuel, friend of Princess Diana and godmother to Prince George (Prince William also wrote the foreward for Lindsay’s book and recorded it for the audiobook). Julia explained that the children would follow their mother’s example so, if Lindsey suppressed her emotions and put on a brave face, the children would follow suit, with potentially damaging long-term implications.
“So when the children get upset, I have a tendency now to get upset with them. We can both be sad together and it’s OK to be sad, and to show them that. My eldest Macy does get upset sometimes, naturally, and say, ‘I miss my dad’. And it is really hard and it really does pull on your heartstrings.
“As a parent, you don’t want them to feel pain. But they’ve amazed me with how brave they’ve been. They’re mini Robs in many ways because of the bravery and the courage. At Rob’s funeral, Macy and Maya were the first to speak. I was an emotional wreck but I had to keep it together.”
It’s abundantly clear that Lindsey is the kind of person who will always put everybody else’s needs ahead of her own. Is she taking care of herself, too? “If the children are happy, then I am happy,” she says. “I feel I’m doing OK. I would ask for help if I needed it. I just try and focus on the positive side of things and that’s what I think gets me through.”
Running has been an outlet, too. “That really does help – with the endorphins and the ‘you time’, that’s my way of coping.” She will run two fundraising marathons this year. Lindsey is determined to honour Rob’s legacy by continuing to raise awareness of MND.
“We still haven’t got a cure for the disease,” she says. “I’m also really passionate about shining a light on the work that carers do. They are essentially keeping our country going. Without them, the health and social care system would collapse. So that’s my focus.”
She also hopes that Britain’s army of carers will take heart from her experiences. “I want to offer hope and inspiration and show that even in the most difficult of times, love and determination can light the way forward.” In the meantime, Lindsey is trying to follow Rob’s example and live in the moment.
“Life is for living. I would give anything to have Rob back here with us now. But I just have to keep going. I have to keep myself busy. From day one, that’s been my coping strategy – not to feel sorry for myself, just to get on with life. You never know what cards you’re going to be dealt. So I make the most of each and every day.”
Prince William has paid tribute to Lindsey Burrow, who cared for her husband Rob Burrow after his diagnosis of motor neurone disease in 2019.
The royal presented Burrow with a CBE for raising awareness of Motor Neurone Disease in January, five months before his death, and has now written a touching forward for her new memoir, Take Care, and even recorded it for the audiobook version.
The Prince of Wales writes: “Despite the advanced nature of Rob’s condition, I was struck by the incredible strength, positivity and incredible resilience of Lindsey. Rob told me she is far tougher than any of the men he has played with or against over the years. I know I am not alone in feeling great admiration for how she has kept going in the face of adversity.
“This book tells Lindsey’s story of perseverance and love. By sharing her story, she is shining a light on those who are dealing with incredibly difficult situations, putting other’s needs before their own and making great personal sacrifices every day. I hope this book provides those going through their own challenges with some comfort and optimism and that it inspires us all to look out for one another.”
Take Care: A Memoir Of Love, Family And Never Giving Up (Century), £22, is out now; to support Lindsey’s marathons, visit givewheel.com/fundraising/5950/2-marathons-in-2-weeks
