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Former professional rugby player Rob Burrow has spoken of his battle with Motor Neurone Disease. The England and Great Britain rugby league player made almost 500 appearances during his 16-year professional career with Leeds Rhinos.
Active between 2001 and 2017 in the Super League, 40-year-old Rob revealed he had been diagnosed with the degenerative disease in 2019, just two years after retiring from playing professionally.
© Alamy
He has now become a patron of the MND Association, a charity that is searching for a cure for Motor Neurone Disease, while supporting sufferers and their families.
MND affects two in every 100,000 people in the UK each year. An estimated 5,000 people currently have the disease. Rob, a rugby league legend, has openly discussed how it has impacted his life since revealing his diagnosis publicly.
Who is Rob Burrow?
Born in September 1982, in Yorkshire, Rob joined Leeds Rhinos at the age of 19. He usually played in the position of hooker or scrumhalf, competing 493 times for the club, winning two Challenge Cups and eight Super League championships, before retiring at 35. He also won five caps for Great Britain and 15 caps for England during his long career.
Weighing 10st 5 lbs during his playing days, at a height of only 5 ft 5 ins, he was known as the Super League’s smallest player.
Awarded an MBE in the 2021 New Years Honours List for his services to rugby league and the Motor Neurone Disease community, he and his wife, Lindsey, have three children: two daughters Maya and Macy and a son, Jackson.
When was he diagnosed with MND?
Rob disclosed in December 2019 that he had been diagnosed with MND. The disease is also known as Lou Gehrig’s disease or amyotrophic lateral sclerosis (ALS). Almost 90% of patients have a mixed ALS form of Motor Neurone Disease, which affects the nerves and brain and progressively worsens over time. Motor neurones in the brain and spinal cord stop functioning properly (neurodegeneration).
Scientists don’t yet know what causes the disease, as only 5% of patients have a family history where faulty genes have been identified. When there isn’t a history, medical experts believe a number of factors combine to cause the disease including abnormal clumps of protein, known as aggregates, developing inside the motor neurones; disruption of the normal movement of nutrients into the cell; and mitochondria abnormalities in the cells.
Early symptoms include a weakened grip, making it hard to pick up objects or lift the arms. Weak ankle muscles can cause “foot drop” or dragging of the leg. As the disease progresses, it spreads throughout the body, leaving the person unable to communicate, move, swallow or breathe properly. Patients may need a specialist bed to help them sleep safely and prevent accidents.
In some 15% of cases, Motor Neurone Disease is associated with a form of dementia. There is currently no cure.
When Rob was diagnosed, he told the BBC he expected to be told he had “something that could be treated and move on”. When he learned he had Motor Neurone Disease, he admitted, “It was a bit of a shock when the doctor told me I had something which has no cure.”
His bravery in battling the disease has been widely praised. As the symptoms progressed, he said, “First, it comes for your voice. Then, it takes your legs. It tries to rob you of your breath, but it can’t sap your spirit.”
How has MND affected him?
Today, Rob can no longer walk or talk – common symptoms of the disease. However, he has managed to write an inspirational autobiography, called Too Many Reasons to Live, to inspire other people not to give up.
He says every morning, when you wake up, you have a choice: “You can spend your day soaking up everything that’s bad about the world, while bitching and moaning, or you can block all that out and do stuff that makes you content.”
When his book was published in August 2021, it was soon the Sunday Times’ number one bestselling memoir as people admired the rugby league legend’s indomitable spirit.
His wife Lindsey is his primary carer. She refuses to get any help, saying she knows her husband would do the same for her if the situation was reversed. He reportedly weighs only seven stone now and Lindsey physically carries him round the house. She also feeds him liquidised meals, as this is all he can eat now.
In an interview with The Mirror, Lindsey said she and her husband hadn’t discussed the options of carers, stairlifts, hoists and other equipment, as it could make their situation become “quite clinical”. She added she wanted to live by their wedding vows, offering support “in sickness and in health”. Lindsey wants to do what she can for as long as possible. She told reporters, “He’s my husband, I want to care for him.”
Rob Burrow Leeds Marathon
The first Rob Burrow Leeds Marathon in the rugby hero’s honour was held on Sunday 14th May in aid of raising awareness and supporting families living with Motor Neurone Disease.
More than 12,000 runners took part, watched by a massive crowd of spectators lining the streets. Lindsey and Rob both completed the course, with Rob being pushed round in his wheelchair. One of the highlights was when his best friend, Kevin Sinfield, carried him across the finish line.
Rob had engaged with spectators and fellow runners along the route and didn’t shy away from openly discussing his condition.
The first Rob Burrow Leeds Marathon raised more than £1.5 million for the MND Association. There are plans to make it an annual event, not only raising a lot of money for the charity, but also raising public awareness.
For more information on Rob Burrow: Living with Motor Neurone Disease talk to Kinderkey Healthcare Ltd