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Rugby legend in race against time to get MND wonder drug to see kids grow up

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Ex Leeds Rhinos star Rob Burrow hopes a groundbreaking treatment could buy him enough time for a cure to be found for Motor Neuron Disease which has put him in a wheelchair

Rob hopes the drug will give him extra times with his children and that he can see them reach the age of 18

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.

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Rob with his dad Geoff and former team mates Matt Diskin, Keith Senior and Barry McDermott
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Image:

Huddersfield Examiner)




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.



Rob, pictured with wife Lindsey and son Jackson, was told he only had two years to live in December 2019
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Image:

Sunday Mirror)




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.”



Six people are diagnosed with Motor Neuron Disease a day in the United Kingdom
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Image:

Getty Images)




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.



Rob’s dad Geoff discovered the drug when trawling the internet for information on the disease
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Image:

Huddersfield Examiner)




“It’s not just about maintaining Rob’s life, it’s about the potential behind it. I firmly believe we are in touching distance of a cure. This drug seems to have had incredible results and this could be Rob’s chance until a cure is found.

“We have to beat this – we are going to. I’ve got to believe that as I won’t allow myself to think any other way. Every day I pray – I don’t know who to – and ask they take my heartbeat and give it to Rob. If he goes, I won’t be long after him.”

The drug, known as AMX0035, targets toxic proteins which cause neurological diseases. It also restores energy to cells which “power up” the body.



Rob is wheelchair-bound and uses eye recognition technology to communicate
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Image:

Daily Mirror)




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.



The ex-Leeds Rhinos and England star is crippled by Motor Neurone Disease and facing a race against time to get the drug
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Image:

Huddersfield Examiner)




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.



The drug, known as AMX0035, targets toxic proteins which cause neurological diseases
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Image:

Allan McKenzie/SWpix.com)




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.



Rob Burrow with his wife and family arriving at the National Television Awards 2021
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Image:

Doug Peters/EMPICS Entertainment)






Rob has twice-weekly treatment wearing a Mollii suit that sends electrical signals to his muscles via 58 electrodes
(

Image:

Getty Images)




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.”

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Rob Burrow with his children Macy, Maya and Jackson
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Image:

PA)




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


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