Geoff and wife Irene, 72, have watched Rob’s deterioration as motor neurone disease takes hold of his body, leaving the ex-Leeds Rhinos star confined to a wheelchair.
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Despite being unable to move or talk and relying on a machine to communicate, Rob is still able to bear the dazzling smile that shows his personality.
And dad Geoff says it’s this that gives the family hope to carry on.
The family have secured two trial drugs for Rob that they say has stabilised his condition, which does not affect his brain.
Geoff, of Pontefract, Yorks, said: “I’ll fight for my son until my dying day.
“As far as we’re concerned he’s living with, and not dying from motor neurone disease. We will keep searching for that cure.”
Dad-of-three Rob, diagnosed with MND in December 2019, is on two trial drugs, which Geoff says have halted the progress of the disease.
He said: “At the time of the original diagnosis everyone in the family was just shattered, it felt like the world had stopped and everything but going downhill.
“But what has helped me is not accepting it when people tell us there’s no cure.
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“When you start looking into things there’s so much research around MND and Rob and others have raised the profile of the condition so much that there is now new treatments.
“Sufferers have waited over 25 years for a breakthrough.
“With all the support we’ve had, we’ve been able to get Rob on trial treatments and that’s the reason why Rob and the family are raising awareness – it’s for all the people sat quietly at home, going through what we’re all going through.”
‘It’s hard but we get through it’
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Rob, who was diagnosed after he began slurring and struggling to pronounce his words, has become the figurehead for a £6.8 million campaign to raise money for a specialist MND centre in Leeds.
The city last weekend held the first-ever Rob Burrow Leeds Marathon, which saw the former England and Great Britain player pushed 26.2 miles around the course by ex-teammate Kevin Sinfield.
Kevin, 41, then carried Rob over the finishing line in emotional scenes.
Rob exclusively revealed his friends’ light-hearted words as the pair completed the race together.
As Kevin lifted Rob from his specially-adapted chair, he joked: “You’re not going to beat me Rob, we are finishing together.”
Kevin said: “He then kissed me on the cheek. It felt like scoring in a Grand Final again.”
Rob’s parents look after him two days a week to allow his wife Lindsey to carry on with her job as an NHS physiotherapist.
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They are clearly devoted to their “cheeky son” whose eyes still sparkle with life when they talk about him.
Rob communicates with his parents through a machine that uses his own voice – recorded in a series of reading sessions before he lost it in October 2020.
Laughing, Irene says: “Rob is just as cheeky as ever. Mind you, he doesn’t chat as much as he used to, it’s more like demands; ‘I’m hungry, can I have pudding and custard? I need a drink, please’.
“But it’s all in Rob’s voice, which is just marvellous.
“When you talk to Rob and see how strong he is, how positive he is you know you have to be as strong as him.
Macy didn’t say much at the time but went to a party later that day and came back and asked ‘Does that mean Daddy is going to die?’Lindsey Burrow
“It’s hard but we do it and we get through it.
“When Rob finished the marathon and got over that line he looked drained.
“I thought, ‘It’s been too much for him’, but a few hours later he was smiling and himself again.”
Rob became a rugby league legend as one of the game’s smallest players at 5ft 4in and Irene says he was determined to take to the field from around the age of five.
She said: “He might have been small but nobody could catch him. We used to hope the bigger boys on the field wouldn’t catch him up because they were huge!”
‘Tower of strength’
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Rob’s wife Lindsey, 40, told how she and Rob faced the heartache of telling their children Macy, 11, Maya, eight, and four-year-old Jackson about their dad’s illness.
She said: “It was a really hard thing to do.
“At the time Jackson was just one so didn’t really understand. Maya was about four and said, ‘What are you telling us that for? It’s really boring’, and went back to playing.
“Macy didn’t say much at the time but went to a party later that day and came back and asked ‘Does that mean Daddy is going to die?’
“We told her it would shorten his life but everyone was doing what they could to help Rob.”
Lindsey, who said she and Rob don’t talk about the future, believes the whole family have been inspired by her husband’s positivity.
She said: “As a family, we don’t do self-pity.
“All our positivity comes from Rob. He is the tower of strength for our whole family.”
Lindsey, who also ran the marathon, said: “We don’t talk about the future. Rob doesn’t like answering those questions.
“We take each day as it comes and, in the meantime, we just want to raise awareness to give people hope and raise money for a cure.
“It’s almost become a purpose for him now. He sees it as his job to raise the profile of research for everyone, whether it be the mailman or the postman who is diagnosed with this disease.”
To donate to Lindsey’s marathon run visit: www.justgiving.com/fundraising/lindsey-burrow1.
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