Rob & Lindsey Burrow and Kevin Sinfield
Rugby league legend, his wife and best friend have raised awareness and millions of pounds for MND-related causes.
Rob, 41, was diagnosed with Motor Neurone Disease in 2019, and initially given just two years to live. Since then, the dad-of-three, along with wife Lindsey, family and friends including former team-mate Kevin Sinfield, has gone on to raise millions for MND-related causes, raising much-needed awareness for the disease along the way.
Determined Lindsey, a physiotherapist, also acts as her husband’s primary carer, carrying him around their home and from his wheelchair to the car. She continues to work as an NHS physiotherapist part-time, when Rob’s parents take on his care.
The sports star, who made 492 appearances for Leeds Rhinos before retiring in 2017, now weighs seven stone, is non-verbal and can only eat a restricted diet. He has no voluntary movement control other than his eyes, which he uses to communicate by spelling out words through a computer.
Earlier this year, Rob was carried across the finishing line by friend Kevin at the first ever Rob Burrow Marathon in Leeds, with rugby coach Kevin running in aid of MND charities. Their close bond and Kevin’s devotion to his stricken pal have inspired the nation.
In 2022, Rob was awarded an MBE in recognition for ‘services to rugby and motor neurone disease awareness’.
Rob and Kevin are now working on a children’s book together, which will be published next year. ‘Try’ is a story celebrating affectionate male friendship, which aims to show young readers, especially boys, that friendships can be based on love and vulnerability, and that there are many ways to be strong.
Lindsey, 40, said: “From the very start, Rob wanted to use his platform to raise awareness on behalf of other people going through the same thing, who perhaps didn’t feel they had a voice to shout about what they were going through. When you get a diagnosis for something like MND, a condition that comes with this hopeless, devastating news that there is no cure, it’s an incredibly difficult time. You feel frustrated and angry, and from the earliest days of all this Rob wanted to do whatever he could to stop people going through the same thing.
“The outpouring of love and support he’s had from friends, family and complete strangers across the country, has carried him through. When you’re told you’ve helped another person or family going through adversity because your story resonates with them, that means a lot, and gives you a reason to carry on. And Rob has carried on in such an inspirational way. Every challenge that comes his way, he tackles it head on. Despite everything he’s going through Rob continues to be a tower of strength for the whole family and inspires us all to truly appreciate that life is for living.”
Funds raised by Rob and his supporters are channelled into vital research into MND as well as towards support for people living with the disease and their families.
Lindsey said: “The fundraising element is crucial because without research, things will never get better. But it’s vital for people going through this now too because the financial pressures are severe. People need to give up work, they need adaptations to their homes. Financial support means one less thing to worry about.
“The support we’ve had right across the country has been phenomenal, and even in these tough times people continue to get behind Rob and do what they can, whether that’s donating money or taking on their own fundraising efforts with a cake sale or a walk at school. We’re so amazed and humbled by other people’s support that it drives us to keep on going.”