‘I was really emotional at the end' – Finding hope on football's march against MND

New York Times

30-03-2025

On the final stretch into Ipswich, seeing the floodlights in the distance, Marcus Stewart tries to prepare himself for the wave of emotion about to wash over him.
Twenty-five years have passed since he signed for Ipswich Town. It is where he spent the best years of his career, his goals propelling them into the Premier League and then into Europe. Coming back to Portman Road has always felt special, but those homecomings have become more poignant in recent years.
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This one has been made on foot. He, along with his wife, Louise, has been part of a team of walkers who set off from Wembley Stadium on Friday morning as the second instalment of an initiative called 'March of the Day'. Two-and-a-half days and 178 miles later, having visited 28 football grounds en route, we are arriving at Ipswich — bleary-eyed, blistered, bedraggled.
Stewart has joined us at various stages, dipping in and out where possible. There are limits to how much walking you can do when you have Motor Neurone Disease (MND), a condition that attacks cells and nerves in the brain and spinal cord, leading to severe deterioration and loss of function. Even that final stretch has taken a lot out of him, emotionally and physically.
A crowd of around 1,000 Ipswich fans are waiting, cheering every walker crossing the finish line. They include famous faces from Ipswich's past: Stewart's former captain Matt Holland, who has barely slept a wink since we left Wembley, and former England defenders Terry Butcher and Russell Osman, now in their 60s, who have walked the final 20 miles from Colchester.
There are also team-mates of former Liverpool, Bradford City and Bolton Wanderers defender Stephen Darby, who has been living with MND since 2018.
The biggest cheers are reserved for the sight of Stewart, who approaches the finish line with his wife, Louise, and Darby's brother, Kevin (main image, above). The fans start singing his name: 'Walking along, singing a song, walking in a Stewart wonderland' and 'Marcus Stewart, he's one of our own'. He looks overcome.
Stewart, 52, is not one for big speeches. 'I'll tell you what,' he says to the crowd. 'I'm just a boy from Hartcliffe, a Bristol council estate, and I get embarrassed when people call me their hero because you are my heroes.'
He composes himself. 'I'm not your hero,' he says. 'I was one day; your support when I played for this football club was unquestionable. Now I don't play for this football club anymore, but your support is still unquestionable and I can't thank you enough.'
From Wembley to Ipswich – the footballing community has come together to walk 178 miles visiting 26 grounds – to raise awareness for MND.
Family and friends of Marcus Stewart and Stephen Darby set off on #BBCBreakfast for 'March of the Day 2' https://t.co/XAayafFD3s pic.twitter.com/bcr9k0rauy
— BBC Breakfast (@BBCBreakfast) March 21, 2025
He mentions some of the former team-mates who have supported him from start to finish — not just Holland from Ipswich, but others such as Jeff Whitley from Sunderland and Martin Paul from Bristol Rovers in the 1990s — as well as others who have walked in solidarity with Darby. 'Stephen's not here,' Stewart says, 'but he will be very proud of you guys.'
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It is Holland's words that resonate the most. His eyes reddening, the former Republic of Ireland midfielder pays tribute to his old Ipswich team-mate, 'not just a fabulous footballer but a fabulous man and we absolutely love him,' and highlights the importance of raising awareness and funds for MND research.
'MND is a horrible disease and we're going to do everything to fight it,' he says. 'We're going to raise awareness, we're going to raise funds, we're going to find a cure. We're going to attack MND.'
Stewart was approaching his 50th birthday when he received his diagnosis, having spent months undergoing tests to try to work out why he kept feeling weakness in his left hand.
Initial tests suggested it might be linked to a bone spur in his neck pressing on a nerve. Even when MND was cited among a range of possible explanations, he dismissed it, thinking it was more likely an issue with his back or neck. The diagnosis, when it came in January 2022, hit him for six.
The term MND covers a group of progressive neurological diseases which include amyotrophic lateral sclerosis (ALS). It is most common among men over the age of 50. Life expectancy after diagnosis is commonly estimated at between two and five years. There is, as yet, no known cure.
Stewart feels — and it is typical of both him and Darby — that he is 'one of the lucky ones'. Three years in, his symptoms have barely developed. The only obvious weaknesses are in his arms and hands; first his left, which now feels 'next to useless', and now his right, which is heading the same way.
'Marcus looks great. He can still come out and join us for a walk and he can still do a speech at the end of the walk,' Louise says. 'There are small things he can't do because he's struggling with his hands. It's just part of our normal routine now: when I'm brushing my teeth, I put toothpaste on his toothbrush as well; when I'm getting dressed, I'll help him get dressed as well. When it's gradual, like it has been with Marcus, you're able to adapt.'
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One of the first people Stewart contacted after his diagnosis was Darby, who was already three years into his battle with the disease. Darby was just 29 and still playing for Bolton when he received his diagnosis in 2018, but he had thrown himself into fundraising, setting up the Darby Rimmer MND Foundation with his friend Chris Rimmer. To date, the foundation has raised almost £3million for support and research into MND.
Rimmer, who had served in the Royal Air Force, lived with MND for eight years before he died in 2022. He always urged Darby to 'attack' the disease. The former Bradford captain has done that for the past six-and-a-half years — joking that he wished he had found those attacking instincts when he was a player.
'Stephen has never felt sorry for himself,' his brother Kevin says. 'He's always felt that this isn't going to control the way he lives. He's always been, 'Right, this is what we're doing'. Chris did a lot of research and Stephen has done the same. The foundation gives him that focus to try to make a difference.'
But the disease is brutal. Darby's wife, former England women's captain Steph Houghton, gave an update on his condition last week, telling ITV how hard it had been to see him lose not only his football career, 'but also the simple tasks that we take for granted, being able to walk, being able to have food, being able to get up the stairs'.
Darby had a PEG (percutaneous endoscopic gastronomy) tube inserted last autumn to help him eat, but the transition has been tough. He has made a breakthrough with the tube since the turn of the year, helping him to regain weight, but he needs full-time care now. Lately, he has begun to experiment with speech-generating devices to help him communicate.
He and Houghton are continuing to help the Stewarts — and vice versa. Both families also help many others whose lives have been affected by the disease. The MND community is remarkably tight-knit. As Stewart has said, it is a community nobody wants to join, but the strength and inspiration he and others have drawn from it is immense.
Like many, Stuart Barlow, who played in the Premier League for Everton and Oldham Athletic in the 1990s, had little inkling of what MND was until it affected his family.
'In May 2021, we lost my mum, Brenda, to MND,' the 56-year-old says. 'She had been diagnosed 18 months earlier. Before that, I had heard of it, but I didn't really know what it was.'
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He got involved with the charity last year after his wife pointed out an article about the original March of the Day walk. 'I thought, 'I need to get involved in this',' he says. 'I called up Mike Wilson, the organiser, and 40 minutes later, I had signed up to be a member of the core team.
'For me, there were two motivations for getting involved. One is to bang the drum, to try to find a cure and to try to do something to make life easier for people who have MND. The other is to do it for my mum. I know that if she was still alive, she would be joining in and cheering us on with my dad.'
Barlow smiles as he says his mother has been with him every step of the way. As on last year's walk, he is carrying her ashes in a small urn (above). 'It just gives me that little bit of hope and encouragement,' he says. 'She's a reminder of why we're here, why I'm doing it, why we're all doing it. She has become a bit of an emblem for the walk for all of us.'
Other members of the core team have similar stories. Schoolteacher Michelle Elliott, a Bradford fan who worshipped Darby during his time at the club, lost her grandfather to MND; Katie Dowson, who works for the NHS, lost her father to the disease. 'My dad was always my biggest supporter; whenever I needed him, he would break land-speed records to be there for me,' Dowson says, 'so it's important to me that I can show that I would do anything for him.'
As we set off from Wembley, Dowson talks about the many 'incredible and inspirational' individuals she has met through the MND community. They include the former Leeds Rhinos rugby league player Rob Burrow, who died last year and who, along with his team-mate Kevin Sinfield, has done so much to raise funds and awareness.
She says she is 'in awe' of the way high-profile figures such as Burrow and former Scotland rugby union international Doddie Weir, who died in 2022, have been so open in sharing their experiences when at their most vulnerable. By doing likewise, she says, Darby and Stewart have 'changed the dial' on MND.
Equally striking is the number of former team-mates willing to go the extra mile — or in some cases 100-plus miles — for Darby and Stewart.
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As well as his brother, father and father-in-law, Darby is represented on the core team by former team-mates from Liverpool (Martin Kelly and Jay Spearing) and Bradford (Nathan Clarke and Filipe Morais).
Houghton's former England team-mate Karen Carney was among those who joined for various stages along the way, as was former Liverpool captain Jamie Redknapp, who was Stewart's room-mate in the England schoolboys team in the late 1980s.
'Just going back to those days when we used to room together, we used to have such a laugh,' Redknapp says. 'I keep in touch with him because he's a good mate of mine and he was a great footballer — really popular everywhere he played. It's a cruel, horrible disease and he has faced it head on with such bravery. I'm here just to show my support.'
Stewart and Redknapp walk together for the first 10 miles, from Wembley to Barnet and then Wingate & Finchley. The walk carries on through north London to the Tottenham Hotspur Stadium and Arsenal, where we are greeted by former players Ledley King and Perry Groves.
By the evening, we are in south-west London after quick stops at Chelsea, Fulham, Queen's Park Rangers and Brentford. Again, former players — Gary Chivers at Chelsea, former England winger Andy Sinton at QPR — join the walk for a stage or two.
The journey continues through Friday night and all day Saturday, from the south-west of London, via Wimbledon and Crystal Palace, into Kent and then back via Charlton Athletic and Millwall through east London, jostling with crowds of tourists on Tower Bridge and then up to West Ham United (below) and Leyton Orient before heading into Essex as another evening draws in.
What is particularly striking is the willingness of many of the smaller clubs to embrace the venture, opening their doors and their facilities and serving refreshments. 'One of the highlights for me was going to places like (AFC) Hornchurch and Billericay Town,' Louise Stewart says. 'You know places like Tottenham and Arsenal are incredible, but the effort that Billericay Town went to, getting sandwiches and sausage rolls for us, was so nice. The chairman at Hornchurch bought us a round of drinks. They were amazing.'
Also striking is the number of people — not just the walkers, but volunteers at several clubs we visit — who mention a personal link to MND. As Louise Stewart says, for what is often described as a rare disease, it seems so common, particularly in sporting circles.
A few weeks ago, Stewart spoke at an event at Yeovil Town, the fifth-tier National League club where he still works part-time as head of player development. He asked his audience how many had heard of MND five years ago. Very few hands went up. He asked how many had heard of it now. Every hand in the room went up.
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There have been high-profile figures diagnosed with MND. In the UK, they include the renowned astrophysicist Professor Stephen Hawking and comedian Ronnie Corbett, who died in 2018 and 2016 respectively. In the U.S, they include the Grammy Award-winning singer Roberta Flack, who died last month aged 88.
But many of the most high-profile cases involve professional athletes, either retired or present. In the U.S, it is still commonly referred to as Lou Gehrig's disease, with reference to the New York Yankees star of the 1920s and 1930s whose record-breaking run of 2,130 consecutive games — and his career — ended abruptly with his diagnosis in May 1939. He died a little over two years later at the age of 37.
Ed Slater (rugby union), David Lawrence (cricket) and Jason Bowen (football) have announced diagnoses more recently, with many more cases before these. Whereas a clear link has been established in recent years between various sports — including boxing, football and American football — and neurodegenerative conditions such as Alzheimer's disease, research into links between high-level sport and MND has so far proved inconclusive.
A study led by Professor Willie Stewart of the University of Glasgow in 2022 found instances of MND were 15 times more common among Scottish former rugby union players than among the general population. The Motor Neurone Disease Association responded cautiously, saying the study had raised important questions but not answers.
'It's what we call a complex, multifactorial disease,' says Dr Brian Dickie, chief scientist for the MND Association. 'Complex in that we don't fully understand it, multifactorial in that there's no single cause. It's an accumulation of factors and we're trying to unpick that.'
Dr Dickie proposes the analogy of a set of weighing scales that might be tipped by a range of factors: some might be genetic, others might relate to physiology, lifestyle or environment.
'Some of those factors might be like grains of sand on the scales, not enough to shift the scale on their own, but possibly increasing the risk factors a little bit more if found in combination with other factors,' he says.
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'One of the grains of sand we're looking at is this potential link with sports and athleticism. Many neurologists will say they never seem to diagnose this disease in somebody who has a history of being overweight and unfit. I've noticed how thin the patients' medical files often are because they have always been fit and healthy up to this point. We often hear about MND in professional sportsmen, but also among people who do marathons etc.
'There are studies that suggest that many people with MND seem to exhibit a hyper metabolism, but these are all questions to which we don't have definitive answers at the moment.'
The MND Association, the My Name'5 Doddie Foundation (launched by Weir after his diagnosis in 2017) and the Darby Rimmer MND Foundation have helped to fund an 18-month research project investigating potential links between the disease and playing professional football.
Previous research points to correlation, but there is so far little or no evidence of causation. More research is needed. That is where charities such as the Darby Rimmer MND Foundation and fundraising events such as March of the Day, backed by the Professional Footballers Association, are so valuable.
Reinforcements arrive. Chris Kirkland, Kelly and Spearing are involved in the Liverpool legends game against their Chelsea counterparts at Anfield on the Saturday evening, but they leave home at 3am on Sunday to join the team in a lay-by on the outskirts of Chelmsford at around 7am, with the aim of walking the final 40 miles or so.
Kelly and Spearing were in the Liverpool team that Darby, as captain, led to the FA Youth Cup in 2006. The three of them went on to play in the first team, memorably appearing as substitutes together in a Champions League match away to PSV in December 2008.
For Darby, that was one of only six first-team appearances at Liverpool. Kelly and Spearing fared better, making 62 and 55 appearances respectively, but both of them hold Darby in the highest regard.
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Kelly, who went on to make 121 Premier League appearances for Crystal Palace, calls him an inspiration. Spearing describes his former captain as 'an unbelievable credit to the human race with the mental strength he has shown'. 'I don't think you would find anyone in the world with a bad word to say about him,' he says.
It's true. Clarke and Morais, who played alongside him at Bradford, describe him in similarly awe-struck terms, recalling his leadership and attitude on the pitch but, even more so, his humility, modesty and warm personality away from football.
Stewart leaves the same impression. He was once one of the most prolific strikers in England — his 19 Premier League goals seeing him finish second to Chelsea's Jimmy Floyd Hasselbaink for the Golden Boot award in 2000-01, when Ipswich finished fifth and narrowly missed out on Champions League qualification — but there is not even a hint of an ego. According to team-mates like Whitley and Paul, there never was. Holland calls him an 'inspiration', 'a truly special man'.
Perhaps the most striking thing about the walk is finding so much positivity and bonhomie among those affected by MND.
The perfect example is David Setters, 67, previously the managing director of a publishing company and an enthusiastic amateur ('very amateur') sportsman, who has been living with MND since 2012. He joins the walk at numerous stages, pushed in his wheelchair by his wife, Helen, and various friends — all of them smiling and laughing every step of the way.
'Although it's a dark, horrible disease,' Setters says, 'it brings the best out of people.'
There were difficult moments throughout the walk. Among the core team, there were blisters, there was exhaustion, there was barely any sleep. In the social club at Dagenham & Redbridge on Saturday evening, there was a mix-up over a Chinese takeaway order (for which The Athletic's representative might have been almost entirely responsible).
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But if ever anyone lost sight of the reasons for the endeavour, a reminder came with a video call from Darby and Houghton (below) that night.
'And it was so nice because — just coincidence, it wasn't planned — I was with Len (Houghton's father) and Paul and Kev (Darby's father and brother) when they called,' Louise Stewart says. 'It was lovely for us to see them, but I think it was also nice for them to see us before they put their sweatshirts on and did their walk. I just hope we did them proud.'
The gruelling event wasn't about getting from A to B as quickly as possible, it was about raising awareness.
'I've never heard so many car horns as when we got to the outskirts of Ipswich,' Barlow says. 'I was thinking, 'Are the drivers around here really bad?'. But no, they were for us, for the walk. And that gives you inspiration because you know it's people who have seen the coverage and they're saying, 'Keep going, you're nearly there'.'
Finally, we saw the floodlights and then, as we got closer, flashing blue lights. Louise Stewart, in particular, was thrown into a panic. 'Had there been an incident or medical emergency at Portman Road?' she says. 'After all that, was it going to be evacuated before we arrived?'
It was nothing of the sort. It was the local fire service paying their tribute on Sir Alf Ramsey Way before we turned into the fan zone and felt the warmth and the love for Stewart.
'I was really emotional at the end,' Holland says. 'The noise, the atmosphere and the reception from the supporters was something special, something I won't forget.'
Neither will Stewart. He talks about the many others who are living with MND and the importance of trying to give them and their families hope.
He mentions the inspiration drawn from Burrow and Weir, how they carried the baton and how he, Darby and many others, without the same profile, feel empowered to take it on, trying to spread hope, find answers and make a difference.