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Home›Trawling›Rugby legend Rob Burrow in race against time to get MND wonder drug to watch children grow up

Rugby legend Rob Burrow in race against time to get MND wonder drug to watch children grow up

By Bridget Becker
September 18, 2021
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Ex Leeds Rhinos star Rob Burrow hopes groundbreaking treatment could save him enough time to find a cure for the motor neuron disease that put him in a wheelchair

Rob hopes the drugs will give him more time with his children and that he can watch them reach the age of 18 (

Image: rob7lindsey / Instagram)

Rugby League hero Rob Burrow prays that a drug lifeline can allow him to watch his children grow up.

The life-prolonging drug alleviates symptoms of the cruel motor neuron disease, which has plagued him for two years.

Once a super-form hero for Leeds Rhinos, England and Great Britain, he is in a wheelchair and uses eye recognition technology to communicate.

But Rob and his family are hopeful that the breakthrough treatment could save him enough time to find a cure.

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Rob with his father Geoff and former teammates Matt Diskin, Keith Senior and Barry McDermott
(

Picture:

Examiner Huddersfield)




He is expected to be one of the first in the UK to take the pioneering drug, which may offer a silver lining.

American tests have shown an improvement in life expectancy in 44% of cases. The average life extension was six months, but at least one patient took the drug for 35 months.

Rob, who is married to his teenage girlfriend Lindsey, is desperate to help raise nine-year-old Macy, six-year-old Maya and two-year-old Jackson.








Rob, pictured with wife Lindsey and son Jackson, learned he was only two years old to live in December 2019
(

Picture:

Sunday mirror)




He told the Sunday Mirror: “This medicine is my hope to see my children grow up.

“Without this drug, the outcome will be grim. I’m afraid I will leave Lindsey to raise our children alone – that’s the last thing I want to do.

“I want to see my trio reach all 18 and so I live in hope. I am realistic but without hope there is nothing.








Six people diagnosed with motor neuron disease per day in UK
(

Picture:

Getty Images)




Rob’s devoted father, Geoff, 70, found the cure while surfing the internet.

The star, 39, next Sunday learned in December 2019 that he might only have two years to live.

Geoff thinks any extra time could be vital. He said: “The new drug gives Rob the motivation to get up and keep going every day. He lives with, and not with, MND. And I’m going to help him do it while I have some breath in my body.








Rob’s father Geoff discovered the drug while searching the internet for information about the disease
(

Picture:

Examiner Huddersfield)




“It’s not just about sustaining Rob’s life, it’s about the potential behind it. I firmly believe that we are within reach of a cure. This drug seems to have had incredible results and it could be Rob’s luck until a cure is found.

“We have to beat this – we will do it. I have to believe it because I won’t allow myself to think any other way. Every day I pray – I don’t know to whom – and I ask them to take my heartbeat and give “It to Rob. If he leaves, I won’t be long after him.”

The drug, known as AMX0035, targets toxic proteins that cause neurological disease. It also restores energy to the cells that “fuel” the body.








Rob is in a wheelchair and uses eye recognition technology to communicate
(

Picture:

Daily Mirror)




Pharmaceutical company Amylix confirmed last night that it was considering UK sites from which to conduct phase three trials. But Rob needs it before then and Geoff is liaising with Massachusetts General Hospital in Boston, one of 25 US testing centers, to have it shipped.

It will cost “thousands”, but the family intends to pay for it from a pot raised by sympathizers.

The treatment, which must be approved by the Food and Drug Administration in the United States, could give hope to 5,000 people in the United Kingdom, where six people a day are diagnosed with MND.








Ex-Leeds Rhinos and England star crippled with motor neuron disease and faces a race against time to get the drug
(

Picture:

Examiner Huddersfield)




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 a scrum-half at Leeds, making more than 500 appearances.

Geoff recounted how he keeps Rob going with a daily four word mantra.








The drug, known as AMX0035, targets toxic proteins that cause neurological disease
(

Picture:

Allan McKenzie / SWpix.com)




He said: “I put my hands on his shoulder and said, ‘We can, we will.’ Rob tells me to face the facts – there is no cure. I reply that these facts are old news. Who knows what tomorrow will find out?

“I have spent years hearing rugby bosses say about my boy: ‘He’s good but he won’t make it because he’s too small.’ But Rob won eight Super League championships and played for England and Great Britain. If that doesn’t defy the odds, I don’t know what it is.

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








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

Picture:

Doug Peters / EMPICS Entertainment)











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

Picture:

Getty Images)




Geoff said learning of Rob’s illness was “the most heartbreaking day of my life” and left him, his wife Irene, Rob and Lindsey, 38, in pieces.

But he said, “It was the last day we cried together when they swore to each other not to cry anymore, so I try not to cry in front of him.”

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Rob Burrow with his children Macy, Maya and Jackson
(

Picture:

PENNSYLVANIA)




The family are behind a £ 5million campaign to create an MND Center of Excellence named after Rob at Leeds Seacroft Hospital. It will help patients, families and caregivers.

On Tuesday, Rob and former rugby union star and other MND victim Doddie Weir, 51, will hand over a petition to No 10 calling for better funding for MND research


Read more

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Rugby league legend Rob Burrow says Covid-19 lockdown accelerated MND decline



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