‘The hardest thing for me is not being able to be the dad I want to be’: Rob Burrow discusses his motor neurone disease battle in emotional ITV documentary – as his proud children call his carer wife their ‘super mum’
- Ex-England rugby player Rob was diagnosed with motor neurone disease in 2019
- READ MORE: Rob Burrow being carried around his house by his brave wife Lindsey in heatbreaking new documentary
Former rugby league star Rob Burrow has opened up about how his battle with motor neurone disease (MND) impacts him as a father in a new heartbreaking documentary on ITV.
The father-of-three, 40, who was diagnosed with MND in 2019, now weighs just seven stone, is non-verbal and can only eat liquidised food spoon fed to him by his wife Lindsey.
He is also required to sleep downstairs and some nights requires a ventilator to decrease high levels of carbon dioxide in his body.
Speaking in tonight’s documentary Lindsey and Rob: Living with MND, the former rugby player opened up about this condition, saying it has made him ‘appreciate’ the ‘little things in life’.
The documentary also heard from Lindsey and Rob’s daughters, Macy, 11, and Maya, seven, who said their mother has always been a ‘super mum’.
Rob Burrow has opened up about his battle with motor neurone disease in tonight’s ITV documentary Lindsey and Rob: Living with MND
‘The hardest thing for me is not being able to be the dad I want to be,’ Rob, who operates a computer with his eyes to communicate, said on the programme.
‘I would give anything to be able to kick a ball with my son or read the kids a bedtime story. It’s the small things and things that often we take for granted that having MND makes you appreciate,’ he added.
The father-of-three also praised his wife, who looks after him and their children while working part-time as a physiotherapist for the NHS.
‘I am extremely proud of Lindsey. I have nothing but admiration for her. Without her, I wouldn’t be here today,’ he added.
Speaking in the documentary, Macy and Maya also had kind words for their mother.
Interviewed after Lindsey completed the Rob Burrow marathon last May in Leeds, Macy said: I think we always had a super mum,’ before Maya added: ‘We had before a super mum, but now we’ve got an even super-er mum.’
‘I don’t even think that’s a word,’ Macy admitted. The 11-year-old also talked of how proud she is of her parents for raising awareness on MND.
‘Mummy and daddy have raised a lot of money for motor neurone disease. This makes me very proud and how lucky I am to have parents like that and they’re just amazing to raise awareness,’ she said.
Rob gives viewers an intimate glimpse into his life with his family including his wife Lindsey (left), eldest daughter Macy (back right), second daughter Maya (front right), and son Jackson (sitting on the arm of the wheelchair)
Lindsey and Rob’s daughters, Macy, 11, and Maya, seven, said their mother has always been a ‘super mum’
Tonight’s programme followed Lindsey Burrow as she trained and eventually completed the Rob Burrow marathon in Leeds, which took place in May, where she raised £102,000 for research into the condition
‘Now no one has to explain what MND is anymore,’ she proudly added.
Rob’s determined wife refuses assistance from carers and equipment, instead carrying him around their home and from his wheelchair to the car.
Speaking on the documentary, she vowed to continue looking after her beloved husband ‘while I’m physically able’, adding: ‘I know he’d do the same for me’.
Lindsey told The Mirror: ‘We haven’t really discussed the option of carers. We don’t want stairlifts, hoists and things, for me it can become quite clinical.
Rob, who was diagnosed with motor neurone disease (MND) in 2019, now weighs just seven stone, is non-verbal and can only eat liquidised food spoon fed to him by his wife
The 40-year-old, a father-of-three, is also required to sleep downstairs and some nights requires a ventilator
Rob Burrow and Kevin Sinfield cross the finish line of the 2023 Rob Burrow Leeds Marathon last month
‘You just want to do what you can, while you can, for as long as you can. He’s my husband, I want to care for him. You say those vows, in sickness and in health, that’s what you want to do.
WHAT IS MOTOR NEURONE DISEASE?
Motor neurone disease is a rare condition that mainly affects people in their 60s and 70s, but it can affect adults of all ages.
It’s caused by a problem with cells in the brain and nerves called motor neurones. These cells gradually stop working over time. It’s not known why this happens.
Having a close relative with motor neurone disease, or a related condition called frontotemporal dementia, can sometimes mean you’re more likely to get it. But it doesn’t run in families in most cases.
Early symptoms can include weakness in your ankle or leg, like finding it hard to walk upstairs; slurred speech, finding it hard to swallow, a weak grip, and gradual weight loss.
If you have these symptoms, you should see a GP. They will consider other possible conditions and can refer you to a specialist called a neurologist if necessary.
If a close relative has motor neurone disease or frontotemporal dementia and you’re worried you may be at risk of it, they may refer you to a genetic counsellor to talk about your risk and any tests you can have
Source: NHS UK
‘He’ll often say: “Thank you for looking after me, I wouldn’t be here if it wasn’t for you doing these things.” I know how grateful he is.’
The couple have been married for 17 years and first met when the former rugby league star was a ‘shy’ 15-year-old.
But their relationship changed forever following Rob’s diagnosis four years ago.
Rob spent his entire career at Leeds and made 492 appearances and also won 15 caps for England and five for Great Britain.
He retired after winning his eighth Super League Grand Final in 2017 and subsequently became the club’s reserve team head coach.
He revealed the MND diagnosis in an emotional statement in December 2019.
Lindsey continues to work as an NHS physiotherapist once a week, a day during which Rob’s parents take on his care, and spends the rest of the time looking after their three children at their home in Castleford, West Yorkshire.
Rob was given two years to live following the diagnosis and now has no voluntary movement control aside from his eyes, which he uses to spell messages on a screen and tell his wife ‘he couldn’t be more proud’.
But Lindsey admits: ‘I don’t think he can really get any worse.’
She also opened up about asking her husband questions around his funeral wishes, with Rob telling her she is ‘still young’ and ‘should find someone else’.
And Lindsey told of how former teammate Kevin Sinfield should be awarded a knighthood for his fundraising efforts.
Rob was carried across the finish line at the inaugural Rob Burrow Leeds Marathon by Sinfield last month after being pushed around the 26-mile course in a wheelchair.
Rob Burrow held by his wife Lindsey in a swimming pool during a physiotherapy session
Rob Burrow pictured ahead of the 2023 Rob Burrow Leeds Marathon, which started and finished at Headingley Stadium last month
The pair were raising money for motor neurone disease (MND) charities and used a specially-adapted chair to join 12,500 other runners in the first Leeds marathon in 20 years.
Rugby coach Sinfield has raised over £8million for MND charities since friend and former Leeds Rhinos team-mate Burrow was diagnosed with the condition in late 2019.
The 42-year-old also completed his Ultra 7 in 7 Challenge in November when he ran seven back-to-back ultra-marathons, running around 40 miles each day.
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