Exclusive:Lindsey Burrow: 'It was a privilege' looking after Leeds Rhinos legend Rob during MND battle
The wife of Leeds Rhinos legend Rob Burrow has opened up about their inspiring journey as a family after he was diagnosed with Motor Neurone Disease, saying it was a “privilege and honour” to look after him.
Lindsey Burrow spoke about the incredible strength of character Rob showed in his fight against the incurable, degenerative disease and his persistence in keeping his wife and three children positive during the struggle.
It comes as she and others are urging the public to vote for ‘There’s Only One Rob Burrow’ for the Best Documentary category at the National Television Awards on Wednesday (September 10).
The documentary, which was produced by the BBC along with Rob and the family, was broadcast following Rob’s death aged 41 on June 2 last year and featured a moving farewell message in which Rob urged people “not to waste a moment” of their lives.
Lindsey said: “When we made the documentary I think we knew it was going to be the last one because we knew Rob’s time was limited.
“What’s really special and important is the message that he left us, which is one of hope and defiance in the most difficult of circumstances. We’ve got to look after each other no matter what cards you’re dealt in life (and) make the most of things.
“We feel incredibly proud as a family to have made the documentary and it would be an absolute dream to take the children on to the stage and just show the nation how proud we are of Rob’s incredible fight and, importantly, continue to raise awareness of MND.”
Two previous documentaries about Rob’s battle with MND have also been made and were both nominated for the same award but lost out on each occasion. Lindsey said she is “under no illusion” about the calibre of the other documentaries nominated, which includes ‘Boyzone: No Matter What’, ‘Strictly Amy: Cancer and Me’, ‘Flintoff’ and ‘Molly-Mae: Behind It All’.
She said: “To be on the shortlist is just incredible and I think whatever happens on Wednesday, we’ll just feel so proud to be there in Rob’s honour.
“He was just your everyday boy who lived his dream of playing rugby. He was told he was never going to make it in rugby because he was too small and told that he’d only live another year after the diagnosis so he constantly defied the odds.”
Speaking to the Yorkshire Evening Post, Lindsey Burrow reflected on the 15 months since Rob’s death and the incredible journey that the whole family went on following his diagnosis in 2019.
She said that two weeks after his diagnosis Rob visited Doddie Weir, who had also campaigned relentlessly after being diagnosed with MND, and that afterwards he became focused on raising awareness and funds to tackle the disease.
“It really instilled hope in him and was a turning point”, said Lindsey. “It was like ‘right, we have to accept this now despite the awful circumstances and just make the most of it’. And Rob led from the front.
“If he wasn’t so positive it could have been a different story.”
As well as campaigning and raising funds, the family became solely focused on creating happy memories together, with Rob implementing a “no tears” policy during his illness.
Lindsey said: “When you’re in that situation you’ve got two choices. You can either wallow in self pity and go down that dark route or just think ‘let’s make the best of the situation we’re in because we can’t change it’.”
She said that Rob’s constant positivity was inspiring, adding: “You’d look at Rob going through what he was going through and having his basic human needs taken away but he never felt sorry for himself. He never said ‘why me?’
“Rob was extraordinary. How he dealt with what he had to deal with I just don’t know.”
She said that Rob’s inherent positivity was something that had defined him during his Leeds Rhinos days and beyond, saying that he was a “happy guy who would do anything for anyone”.
“There was never any ego with Rob”, Lindsey said. “He was very family-orientated and very down to earth. You couldn’t meet a nicer person.”
Lindsey said that Rob’s biggest drive to fight and stay alive was to be around for his three children, who were also active participants in the fundraising and campaigning over the years.
Lindsey said: “Rob’s words were that he had too many reasons to live and I think it was the children more than anything that kept him going.”
She added: “The children have been brilliant. I think the bravery and courage they’ve shown is something instilled in them from their dad.
“I’m so proud and I know how proud Rob was of Macy, Maya and Jackson.”
Lindsey said that Rob’s inspiration also helped her get through the difficulty of supporting the family during that time, saying that his “positivity rippled through the family”.
“I found it really difficult at first because I work as an NHS physiotherapist so I knew the path that was ahead of us and I don’t think Rob had that insight.”
She said that her experience in the NHS helped her transition smoothly into the role of carer though, adding: “It was a privilege and honour to look after Rob and I know he would have done the same had it been the other way around.
“We just had to deal with things as the disease progressed. When he was first diagnosed he was still able to walk and still coaching but then it got to the point where he needed help with the basic functions that you and I take for granted.”
Following his death there was a huge outpouring of grief and support for the family, with hundreds of tributes left at Headingley Stadium.
Lindsey said: “We are so grateful for that and it’s brought comfort in the tough times. I think anyone who’s experienced loss and grief will know you have your good and bad days but we’ve just stuck together and I think Rob showed us how to get through tough times and how to be brave and courageous.”
“Rob wanted us to be happy and we made that promise to him that we would live each day to the fullest.”
She said that there are still difficult moments when she remembers that he is no longer with us, saying: “It might be little things that will remind you or you’ll go to message him and there’s that sudden realisation that he’s not there anymore. It can hit you out of nowhere and we’re still navigating those difficult times.
“Now it’s been about teaching the kids that sometimes it’s okay to be sad because so much of Rob’s fight was about putting on a brave face.”
Rob’s legacy has certainly been secured. Through various public campaigns led by Rob and his good friend and former Leeds Rhinos teammate Kevin Sinfield the duo were able to raise over £20million towards tackling MND. Leeds Marathon was also established in his honour and the £6.8m Rob Burrow Centre for MND is due to open in Leeds this autumn.
Lindsey said that her and the family are also “passionate” about continuing Rob’s legacy, adding: “There’s 5,000 people still living with MND in the UK so I think we’ll always continue to do our little bit in our own way, whether it’s running the marathons or fundraising. We’ll continue to help wherever we can.”
Lindsey and others have been campaigning for ‘There’s Only One Rob Burrow’ to receive the Best Documentary award at the National Television Awards, with people handing out leaflets and promoting it on social media.
She said: “The outpouring of love and support we’ve had as a family has just been incredible and the reason we want to win it would be to honour Rob’s legacy and incredible fight and just show the nation how proud we are of him and the difference that he’s made.”
Readers can vote for ‘There’s Only One Rob Burrow’ by visiting the National Television Awards website.