Rugby legend Rob Burrow in race against time to get MND wonder drug to see kids grow up
Rugby League hero Rob Burrow is praying a wonder drug lifeline could allow him to see his kids grow up.
The life-extending drug eases symptoms of cruel Motor Neurone Disease, which has blighted him for two years.
Once a superfit hero for Leeds Rhinos, England and Great Britain, he is wheelchair-bound and uses eye recognition technology to communicate.
But Rob and his family hope the groundbreaking treatment could buy him enough time for a cure to be found.
He is set to be one of the first in the UK to take the pioneering drug, which could offer him a glimmer of hope.
US tests saw improved life expectancy in 44% of cases. The average life extension was six months but at least one patient was on the drug for 35 months.
Rob, who is married to teenage sweetheart Lindsey is desperate to help raise Macy, nine, Maya, six, and Jackson, two.
He told the Sunday Mirror: “This drug is my hope that I see my kids grow up.
“Without this drug it will be a bleak outcome. I worry about leaving Lindsey to raise our kids alone – it is the last thing I want to do.
“I want to see my trio all reach 18 and so I live in hope. I am a realist but without hope there is nothing.”
Rob’s devoted dad Geoff, 70, found the treatment while trawling the internet.
The star, 39 next Sunday, was told in December 2019 he may only have two years to live.
Geoff feels any extra time could be vital. He said: “The new drug gives Rob the drive to get up and carry on each day. He is living with, not dying from, MND. And I will help him do that while I have breath in my body.
Drug company Amylix last night confirmed it was considering UK sites from which to run phase three trials. But Rob needs it before then and Geoff is liaising with Boston’s Massachusetts General Hospital, one of 25 US trial centres, to have it shipped over.
It will cost “thousands” but the family intend to pay for it from a pot raised by well-wishers.
The treatment, due to get the US go- ahead by the Food and Drug Administration, could give hope to 5,000 sufferers in the UK, where six people a day are diagnosed with MND
In 2018 it claimed the life of British scientist Stephen Hawking.
Rob, of Pontefract, West Yorks, was diagnosed two years after retiring from a 16-year career as scrum half with Leeds, making more than 500 appearances.
Geoff told how he keeps Rob going with a daily four-word mantra.
He said: “I put my hands on his shoulder and say, ‘We can, we will’. Rob tells me to face facts – there is no cure. I reply those facts are old news. Who knows what tomorrow will discover?
“I’ve spent years hearing rugby bosses saying about my lad, ‘He’s good but he won’t make it as he is too small’. But Rob won eight Super League championships and played for England and GB. If that isn’t defying odds I don’t know what is.”
Rob has twice-weekly treatment wearing a Mollii suit that sends electrical signals to his muscles via 58 electrodes.
Geoff said learning about Rob’s illness was “the most heartbreaking day of my life” and left him, wife Irene, Rob and Lindsey, 38, in bits.
But he said: “That was the last day we cried together as they vowed no more tears, so I try not to cry in front of him.”
The family is behind a £5million drive to set up an MND centre of excellence named after Rob at Leeds Seacroft Hospital. It will help patients, families and carers.
On Tuesday, Rob and ex-rugby union star and fellow MND sufferer Doddie Weir, 51, will hand a petition to No10 calling for better funding into MND research
- To donate to the appeal, go to leedshospitalscharity.org.uk
Reference: Mirror: Sheron Boyle