‘I don’t want people to feel sorry for me, I just want to live a normal life’: Doddie Weir, Rob Burrow and Stephen Darby unite to discuss living with motor neurone disease and the impact it has on their families
- Doddie Weir, Rob Burrow and Stephen Darby have come together for first time
- Three former sport stars are battling the incurable motor neurone disease
- All three are at different stages of their prognosis and affected differently
- They are seeking to raise awareness and campaign against the illness
Former sport stars Doddie Weir, Rob Burrow and Stephen Darby came together on Wednesday morning to discuss their fight against motor neurone disease.
The trio are at different stages of their prognosis and met up for the first time to discuss their experiences on BBC Breakfast.
The disease is hitting all three at different stages; Weir, a former rugby union player with Scotland and the Lions is most affected around the shoulders. Darby, a footballer who came through the academy at Liverpool and most recently Bradford and Bolton, is most affected in his hands.
Stephen Darby (left), Doddie Weir (centre) and Rob Burrow (right) have come together to discuss their shared experiences of motor neurone disease
The trio are hoping to raise awareness and fight against the debilitating illness
Burrow, a former rugby league player who won eight Super League titles with Leeds Rhinos, is losing his voice and admits he just wants to keep as much of a normal life as possible.
The 37-year-old said: ‘The big thing for me is normality. I don’t want people to feel sorry for me. I just want to live a normal life, take the kids to school etc.’
Weir, 49, agreed: ‘Very good point. For me, I’m further down the line, so live for the day and the weeks and the months will look after themselves. Being here with these boys, meeting yourself is a very special day.’
Darby, 31, added that keeping a family life is his most important goal, instead of chasing dreams: ‘I don’t really have a bucket list. It’s just to spend time with the wife, family and friends. Just to see them happy and smiling makes me happy.
‘I think what it teaches you is not to take anything for granted… realise it doesn’t take a lot to be happy, so just enjoy today.’
Former footballer Darby wants to continue enjoying a normal family-oriented lifestyle
Former rugby league star Burrow wants to be able to still say his children’s names
Former rugby union player Weir is most affected by the disease in his shoulders
All three admit that they have had to learn not to try and shoulder too much upon themselves, and not be afraid to be open and honest.
WHAT IS MND?
Motor neurone disease (MND) is an uncommon condition that affects the brain and nerves. It causes weakness that gets worse over time.
It’s nearly always fatal and can significantly shorten life expectancy, but some people live with it for many years.
There’s no cure, but there are treatments to help reduce the impact it has on your daily life.
For more information head to the NHS website
‘You get to a stage where you say, “look, I do need help”‘, said Weir.
‘These boys are not quite there yet, but it is quite hard because, as a bloke, you just think, “I’m fine”, but with us that’s not quite the case.
‘I need a lot more help than these boys. My kids do my hair but they do a Mohican and I can’t change it. They’re quite cheeky that way. It’s such a debilitating condition, we’re here to put the fight together to make a difference.’
Burrow added: ‘I promised my wife I’d be honest throughout the process. Like you say, men keep things to themselves, too proud to ask for help, but throughout this process I will need help.’
‘You try and accept diagnosis but fight the prognosis. That’s why we’re here today’, said Darby.
All three admit the disease takes a huge toll on family members and loved ones.
Weir played 61 times for Scotland between 1990 and 2000 and was selected by the Lions
Burrow won eight Super League titles during a glittering career with Leeds Rhinos
Darby, pictured alongside his wife, England women’s captain Steph Houghton, last year
‘In a way, it’s almost harder for your wife and family to see what you’re going through and they’re hurting just as much as you are’, said Darby
Weir added: ‘My wife has been on the journey with me as well… (after the diagnosis) she burst into tears. I said, “right, we’re going to fight”. Telling family is tricky.’
For Burrow, the biggest battle is coming to terms with losing his voice, and already it has changed beyond recognition. He just wants to be able to still say his children’s names.
‘Unfortunately there will be a day when I can’t speak’, he admitted. ‘This is not how my voice was, but hopefully through interviews and audio I’ll still be able to tell the kids off and tell them I love them.
‘For my voice to say their name I think is important for them.’
They believe that their shared background in sport has helped in giving them the right mentality to fight.
Burrow said: ‘Doddie showed me the path I need to go down… the positivity, his humour. I’m a guy that likes banter. I’m continuing that!’
The trio believe that the mentality they have gained from playing in sport helps in their battle
Darby added: ‘When you play against opponents, you’re always looking at ways to beat them and get the better of them. That mentality translates into what we are doing now.’
‘It’s like a game in a way. We’re here to try and beat MND. Let’s work together and fund. The bigger the team the better the result’, said Weir.
The sporting trio have come together in a bid to raise awareness of an illness without cure that gives people an average life expectancy between one and three years.
‘It’s through unfortunate circumstances that we’ve come together, but it’s something which we need to turn into a positive’, said Darby.
‘I think by being here today talking about what we’re going through and talking about MND and how devastating a disease it is, it’s important that we raise that awareness and we get that message out there.’
BBC Breakfast is on BBC One every day from 6am
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