Inside Rob Burrow's health battle from first symptoms to brave wish for family
Rob Burrow has had a profound impact on the MND community and his efforts have now been further commended in the New Year Honours List 2024.
The rugby league legend has been awarded CBE, Commander of the British Empire, for services to motor neurone disease awareness after he was awarded an MBE in 2021. He has made such a lasting mark that his wife has said patients now tell doctors: "I think I have the Rob Burrow disease."
When Rob was diagnosed aged 37 in 2019, many people did not know exactly what the illness meant. Lindsey, 40, told the Mirror: "To have that effect where people have seen Rob's story and know what MND is, really pulls at your heartstrings.
"To hear from the other MND warriors and what other people have gone through, it brings a lump to the back of your throat. As a family, we are so proud of what Rob has achieved... despite the situation we still live happy lives and we are not going to let MND stop us."
Lindsey and Rob before a Leeds game at Headingley (PA)BBC Two documentary, Living with MND, aired last October and showed the effect of the disease on the whole family - including Rob's proud daughters Macy, 11, and Maya, eight. It has left 'Rhino Rob', who lifted eight Super League trophies and two Challenge Cups during his career as a scrum-half with Leeds Rhinos, now unable to walk or talk.
Kevin Sinfield goes extra mile for MND sufferers as he brings hope to Rob Burrow
The doc also heard from his ex-teammate, who explained how he first showed signs of being unwell at an awards ceremony, where he slurred his speech. Rob added: "When I was diagnosed, I think I took it better than Linds. I think I was just happy for it to be me and not anyone else in my family."
But despite his life-limiting diagnosis, the devoted dad immediately had a brave wish for his family, insisting on a "no-more-tears policy". Rob said: "When I was diagnosed, I was terrified but I realised I could control how I approached my situation mentally. I refuse to give in, I will fight and fight. I use positivity to get me through and sometimes even when things are hard I like to crack a joke and make everyone laugh."
The 40-year-old has been robbed of his ability to be a hands-on dad and play rugby in the garden with his son, Jackson, four. But all three children idolise him. The eldest, Macy, opened her dad's documentary by saying: "My dad will always have a place in my heart", and ended it by saying: "He has left a mark on the world."
Rob and family in Leeds in June (PA)In the four years since his diagnosis, Rob's best pal and former team-mate Kevin Sinfield has helped him raise over £13million for MND charities. The condition affects the brain and nerves and can affect a person's ability to walk, talk and swallow. At the moment, there is no cure, but there are treatments which can help with some of the symptoms.
Rob previously told the BBC: "The hardest bit is that you do not know why you have it and there is nothing you can do. Maybe it's the athlete in us all, we don't want to lie down and just take it, we want to compete."
The money raised by Kevin, Rob and Lindsey is already helping people living with MND to adapt their homes, and funding research into the disease. Lindsey said: "We probably forget the rugby player sometimes and what he achieved in his career but I think the legacy that he has created and the awareness he has raised is really making a difference. He probably will be remembered more now for what he has done for MND and changing people's perception of it."
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