Stephen Darby is a fighter. He wanted the facts and he got them. ‘If you were to ask me if you’ll be here in a year I’d say yes,’ the specialist explained matter-of-factly.
Having just delivered the crushing news that Darby had Motor Neurone Disease, he went on. ‘If you were to ask me if you would be here in two years I would say yes,’ he added.
Then came the devastating pay-off. ‘If you were to ask me if you would be here in three years, I would say hopefully.’
Stephen Darby was diagnosed with Motor Neurone Disease and given just years to live in 2018
The ex-Liverpool defender was 29 on that September afternoon in a Sheffield hospital last year.
A player at Bolton Wanderers, he was studying his coaching badges with an eye on retirement. Three months previously, he had married the love of his life, England and Manchester City Women captain Steph Houghton. And now this.
Darby’s instant thoughts were with his wife and his family, not himself, which tells you much about the man. But he also wanted to meet the challenge head on, wanted to know exactly what he was dealing with. It was not pretty.
There is no cure for MND, a rapidly debilitating disease that mercilessly attacks the muscles. Sufferers will lose the strength in their limbs and the ability to walk, he was told. It then goes for the muscles you use to talk and the voice goes. Food ends up being delivered by a peg. Finally, it targets the muscles that keep you breathing and that spells the end, albeit at various speeds.
Despite the ‘brutal’ diagnosis last year, Darby insists he still has plenty to smile about
‘Brutal’ is the word Darby uses to describe it. It is brutal in more ways than one. After diagnosis, he wanted to continue the physio sessions he had been having via the NHS to try to rebuild strength.
‘The physios came to my house and after a couple of visits signed me off,’ he recalls.
The inference was clear. We cannot help you. Brutal is the right word.
But this is not a sob story. This is the story of an incredibly brave man who, rather than being angry at the world, wishes to help others.
Far from feeling sorry for himself, Darby set up the Darby Rimmer Foundation with family friend and fellow sufferer Chris Rimmer.
Darby’s instant thoughts were with his wife Steph Houghton (R) after being told he had MND
The pair have already raised close to £400,000. The aim is to help others because the existing help is not what it should be. A cure would also be nice. When we meet at a Manchester hotel, Darby is positive. He is also in relatively good shape.
Strength in his hand is not what it was but he is still getting out to play golf occasionally. The humour remains intact.
‘I beat Matt last time we played,’ he says, poking fun at his agent and friend who is with us, Matthew Buck.
Darby still goes to games to see his beloved Liverpool.
Before the international break, the former Kop season-ticket holder was at Anfield to see them turn over his wife’s employers.
Darby and his friend and fellow sufferer Chris Rimmer (R) have raised close to £400,000
‘She wasn’t impressed,’ he says. ‘She sat with me among the Liverpool fans. I was just happy that we were still married by the time we got home!’
It is all part of the plan to keep things as normal as they can for as long as they can.
Darby does not know how much time he has so he does not wish to waste it thinking about what lies ahead or questioning why him.
‘It is a devastating diagnosis,’ he says. ‘But I can’t change that.
‘There’s no point in getting down about it or thinking about it every day. That’s a waste of time. At the moment I’m independent although I have symptoms. I still do most things. There’s no point in using that time to feel sorry for myself.’
Darby isn’t sure how much time he has left and doesn’t want to waste it feeling sorry for himself
It already feels like a long road. Darby was a Bradford City player, driving home from training one afternoon in the spring of 2017 when the first symptom reared its head. ‘Randomly, my hand fell off the steering wheel,’ he recalls.
‘I managed to put it back on and got home. I thought it was a trapped nerve, or something strained. Me and Steph were joking about it.’
Then came the muscle twitching and the journey to finding out what was going on.
There is no test for MND. The diagnosis comes after all other possibilities have been ruled out. There were brain scans (‘they did find a brain in there’), blood tests, a lumbar puncture. ‘Not pleasant,’ says Darby.
‘It was good they weren’t finding anything too serious, but at the same time you still don’t know what it is.’
I ask if he used Doctor Google to self-diagnose. ‘I did,’ he says.
Ex-Rangers captain Fernando Ricksen died in September after losing six-year battle with MND
WHAT IS MOTOR NEURONE DISEASE (ALS)?
The NHS describes motor neurone disease (MND) as: ‘An uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.’
The weakness is caused by the deterioration of motor neurons, upper motor neurons that travel from the brain down the spinal cord, and lower motor neurons that spread out to the face, throat and limbs.
It was first discovered in 1865 by a French neurologist, Jean-Martin Charcot, hence why MND is sometimes known as Charcot’s disease.
In the UK, Amyotrophic Lateral Sclerosis (ALS) is referred to as Motor Neurone Disease, while in the US, ALS is referred to as a specific subset of MND, which is defined as a group of neurological disorders.
However, according to Oxford University Hospitals: ‘Nearly 90 per cent of patients with MND have the mixed ALS form of the disease, so that the terms MND and ALS are commonly used to mean the same thing.’
Weakness in the ankle or leg, which may manifest itself with trips or difficulty ascending stairs, and a weakness in the ability to grip things.
Slurred speech is an early symptom and may later worsen to include difficulty swallowing food.
Muscle cramps or twitches are also a symptom, as is weight loss due to leg and arm muscles growing thinner over time.
MND is difficult to diagnose in its early stages because several conditions may cause similar symptoms. There is also no one test used to ascertain its presence.
However, the disease is usually diagnosed through a process of exclusion, whereby diseases that manifest similar symptoms to ALS are excluded.
The NHS says that MND is an ‘uncommon condition’ that predominantly affects older people. However, it caveats that it can affect adults of any age.
The NHS says that, as of yet, ‘it is not yet known why’ the disease happens. The ALS Association says that MND occurs throughout the world ‘with no racial, ethnic or socioeconomic boundaries and can affect anyone’.
It says that war veterans are twice as likely to develop ALS and that men are 20 per cent more likely to get it.
There is no cure for MND and the disease is fatal, however the disease progresses at different speeds in patients.
People with MND are expected to live two to five years after the symptoms first manifest, although 10 per cent of sufferers live at least 10 years.
Occupational therapy, physiotherapy and medicines such as riluzole are used to palliate the effects of the the disease.
Lou Gehrig was a hugely popular baseball player, who played for the New York Yankees between 1923 and 1939. He was famous for his strength and was nicknamed ‘The Iron Horse’
Lou Gehrig’s Disease
As well as being known as ALS and Charcot’s disease, MND is frequently referred to as Lou Gehrig’s disease.
Lou Gehrig was a hugely popular baseball player, who played for the New York Yankees between 1923 and 1939.
He was famous for his strength and was nicknamed ‘The Iron Horse’.
His strength, popularity and fame transcended the sport of baseball and the condition adopted the name of the sportsman.
He died two years after his diagnosis.
‘You’re not getting any answers from the professionals. I read about Fernando Ricksen (the ex-Rangers star who recently passed away from the disease) and (MND-suffering former Scotland lock) Doddie Weir. I’m reading about their symptoms and thinking in the back of my mind that’s quite similar. I was going on the internet but tried to live life as normally as possible.’
When the news was finally delivered, he was with his mum, dad and agent. It was unexpected.
MND is thought to target older people and the treatable Isaacs syndrome was thought to be the culprit. So much so that Steph was in Spain on Champions League duty with City. She was at his side for the follow-up appointment days later.
‘It’s your worst nightmare,’ Darby says. ‘The toughest part was thinking about what it’s doing to my wife, mum, dad, brother and friends. I couldn’t believe it, really. You never think you will be in that position. Even now sometimes I look back and it doesn’t seem real.’
When Darby asked about next steps he was told to come back in three months. No pills, no treatment, no hope. It still rankles.
The former defender was playing for Bradford when the first symptom of MND reared its head
‘Come back in three months and we’ll see how you are,’ he recalls. ‘I asked about vitamins, supplements, if there was anything I could do. They said no. I asked them if making changes to my diet could help. They said no. I moved to Salford Royal to be closer to Manchester, where we live, and asked them what I could do.
‘They said nothing at the moment but when things deteriorate they could try to help.’
That lack of support is one of the reasons behind the Foundation.
‘Everything I am doing is off my own back,’ Darby explains. ‘They don’t know how you get it or what causes it. A lot comes down to funding and awareness. You don’t get much help from the doctors.
‘You find strength and comfort from speaking with those with MND. At the moment it’s down to those going through it to help each other and it shouldn’t be like that.’ Help has also come from football.
The 31-year-old discovered he had MND just three months after tieing the knot with England Women captain Houghton (pictured together here on their wedding day in 2018)
‘The PFA have been magnificent,’ Darby says. ‘As have Bradford, Swindon and Bolton, my old clubs. Liverpool have been brilliant.’
There was a weekend in Glasgow with Steven Gerrard.
‘I met the Rangers players and him,’ says Darby. ‘His backroom staff. It was a real boost. They gave balls and shirts for us to auction. A great trip. Support like that keeps you going.’
There has also been time with Rafa Benitez, while a group including Bolton greats John McGinlay and Tony Kelly walked for three days through the night from Bradford to Liverpool to raise funds.
All of the money will go to raising awareness, support and research.
‘At the moment there’s more going on than 10, 20 years ago but we need to keep pushing that, doing more,’ Darby says. ‘It’s more in the spotlight now, which is the way it should be.
‘Raising awareness is massive. There are some promising things in the US and beyond.’
He began his career at Liverpool, and said they, and all the clubs he has played for, have been brilliant since his MND diagnosis
A recent trip to Boston — ‘I learned more in an hour than I have in 12 months here’ — showed there is hope. Does he ever allow himself to dream of a cure in his lifetime? ‘The processes when they have trials — they may take three to five years and then it would have to be approved,’ he explains.
‘That could take another year, two years. People with MND don’t have that time. That’s what’s tough, but I think you have to have that hope, that belief that something will happen. If you don’t then things would be tough. Hopefully something does come sooner rather than later. All we can do is everything we can to try to help and see where we go.’
In the meantime, there are things to look forward to.
Liverpool ending their long wait for a Premier League title is one. ‘It would be nice, wouldn’t it?’ he says.
Darby admits the hope that there will one day be a cure for MND keeps him going
And then there is the time he has with his wife. ‘I’m lucky. I couldn’t have gone through this without her,’ he says. ‘I know it must have been tough for her.
‘To get married in the June then get the news in September when you’re looking forward to and trying to plan the future. It’s obviously devastating but she’s been unbelievable, an inspiration, a rock.
‘To go through what we’re going through and be captain of Man City and England and play at the highest level is testament to her and her character. She’s an amazing girl. I can’t thank her enough for what she’s done.’
Darby’s own spirit is incredible. Inspiring. Before we say goodbye, I ask him what gets him out of bed each day. His response speaks volumes. ‘Some days you may feel down but you realise you’ve got a lot to smile about, a lot to be thankful for,’ he says. ‘I’m a very lucky lad. I’ve got an amazing wife, mum and dad, brother and friends. A lot of amazing people around me — I’ve got a lot to live for.’
Stephen Darby is a fighter.
For more information, or to donate to the Darby Rimmer Foundation, visit: www.darbyrimmermnd.co.uk
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