Lindsey Burrow: Leeds Rhinos legend Rob Burrow's wife on becoming a public face for the motor neurone disease community

He had previously made almost 500 appearances for the Rhinos between 2001 and 2017 as part of a team which won eight Super League titles, two Challenge Cups and three World Club Challenge trophies.

Lindsey, 40, who grew up in Castleford, says: “To suddenly have all this media attention, it certainly pushes me out of my comfort zone because I'm quite family (focused) and low key, there's no frills or anything, we're just everyday working class, ordinary people, so to suddenly be kind of getting thrown into the limelight and have people wanting to do interviews and and talk to you is is quite surreal.”

Hopping on to a Zoom call in her car behind Leeds General Infirmary between jobs, the NHS physiotherapist adds: “I think when you look at Rob, he's opened his doors at a time when he's at his most vulnerable, he's shared his story and I think I'm just there to support Rob and if sharing our story helps one other person or one other family then, you know, then that can only be a good thing.”

Such is her profile these days that last year she was interviewed on the High Performance Podcast, Jake Humphrey and Professor Damian Hughes’ show which has also featured the likes of heavyweight champion boxer Tyson Fury and ex-Premier League footballers Rio Ferdinand, Joe Cole and Peter Crouch. The podcast has donated from its sponsorship budget and subscription income to the MND Association and, ahead of a live version of the podcast at Leeds Grand Theatre on July 2, the hosts have also given away two tickets to charity members, while Lindsey is invited as a guest.

But does she ever have time away from the world of MND campaigning for herself? Marathon training helps to take her mind away off daily life, she says. But really, even that’s all part of the effort to fight for people with the disease - and it’s in her husband’s name.

The Rob Burrow Leeds Marathon takes place on Sunday, May 14 and is being held in support of causes including Leeds Hospitals Charity and the £5m needed for the Rob Burrow Centre for Motor Neurone Disease Appeal. This would help create a bespoke centre homing all MND services under one roof in Leeds, where patients will have access to a range of holistic support tailored to their needs. It was announced last week that the marathon had passed the £1m fundraising mark.

Lindsey has hurt her knee so hasn’t run for a few weeks, but says: “If I have to hobble around the 26 miles, I'm determined to do it.”

Those participating can take inspiration from Kevin Sinfield, Rob’s friend and former Rhinos team mate, who was helped to raise millions of pounds with challenges including his seven ultra marathons in seven days last year.

Lindsey adds: “Rob is going to take part in the race with Kevin, so that'll be really special, although I think they'll finish a bit before me, I have to say. Even pushing Rob around I think they’ll be ahead of me.”

Rob has now lost his mobility, and Lindsey says there is not much to report in terms of his health. “He’s quite stable at the minute, he’s still in good spirits, still got that infectious smile.

“The kids are off this week (she spoke during the school holidays) so keeping us busy with running here, there and everywhere,” she says of Macy, 11, Maya, eight, and Jackson, four. “But Rob loves it, he’s such a family man so having the kids at home brightens up his day.

“He’s just carrying on fighting as he always has some really. He just kind of gets on with things and doesn't complain, doesn't moan - just Rob.”

Their children’s resilience is just one of the eye-opening parts of last year’s BBC documentary Rob Burrow: Living with MND.

“I think their positivity comes from Rob because I think that ripples through the whole family and Rob's kind of said: ‘I’ll accept the diagnosis but I'll fight the prognosis’, says Lindsey. “We just try and keep it as normal as we can and I'm really proud of the children because they don't look for self-pity, they just get on with life and they're such bundles of fun and joy. You see them on a morning and it gives you a reason to smile. They wake up happy and full of life and that's what it's about, isn't it? It's just enjoying life and making the most of life.”

She says Rob, also 40, has always been hands-on father but he’s no longer able to do things like read them a bedtime story. Being honest with their children about his condition has been important, she says.

“You just want to do the right thing by them and just to be honest with them because I just didn't want them to turn around and say: ‘You said daddy was going to get better’,” she says.

“I think they pick up on things, they know when there's something not right and, for me, when Rob was diagnosed, telling the children was my biggest worry. How were they going to respond? How do you tell the children? What do you say? We didn't have enough of the answers at that point in time. We didn't know and healthcare professionals couldn't give us the answers. It was really difficult but I think once they knew, it almost kind of felt like a weight had been lifted off our shoulders because we weren't hiding things from them then.”

Lindsey also hopes that a new storyline on Coronation Street – a staple in her household growing up – will raise awareness as the character Paul Foreman faces up to a diagnosis of MND over the coming weeks. She thinks it will “bring the reality into people's living rooms” as “you don't often see what goes on behind closed doors”. She also notes that it could highlight the financial strain of MND.

On the prospect of a cure, she says they have always been told that “it’s not incurable, but they just need the money to do the research to find the cure”.

She adds: “My hope would be that when people are diagnosed with MND, it's a case of: ‘You have MND but there is a treatment we can offer, we can slow down the progression of the disease. Whereas most people are told: ‘You've got a diagnosis of MND, you might have a year or two at most to live, 50 per cent will die within three years of diagnosis’. So those are not statistics that you want to hear. And I think to be told that is… I can't think of anything worse. You know, it's the most cruel, devastating disease to have.”

Asked how if feels that any medical advances may come too late for her husband, Lindsey says: “People with MND don't have the time to wait. That's why it's crucial to get that funding into the research because people with MND just don't have the time and the disease takes hold of you so quickly, that they just don't have time.

“(It’s) bittersweet, but we can't change what it is and I think we've just got to make it better for other people and we've got to keep raising that awareness and raising those funds to hopefully find, one day, a cure.”