NEW HOPE FOR RUGBY LEGEND ROB
RUGBY legend Rob Burrow is to start a new wonder drug that could be his last hope to see his three beloved children grow up.
He will be among the first Brits to try the motor neurone disease treatment, which has given some patients six more months’ life and eased symptoms.
Rob hopes the US drug will buy time to find a cure for MND so he can see daughters Macy, nine, Maya, six, and son Jackson, two, become adults.
The ex-leeds Rhinos scrum-half said: “Without hope there is nothing.”
Rob’s dad Geoff found the drug, AMX0035, while trawling the internet for a cure. Geoff said: “He’s living with not dying from MND. I will help him do that while I have breath in my body.’
Rob, 38, of Pontefract, West Yorks, who was with Leeds 16 years and also played for England and Great Britain was diagnosed two years after retiring. In December 2019, he was told he had up to two years to live.
Last year he lost his ability to speak and relies on eye recognition technology to communicate. He is in a wheelchair.
Rob, married to teenage sweetheart Lindsey, also 38, said: “This drug is my hope that I see my kids grow up. Without this drug it will be a bleak outcome. Leaving Lindsey to raise our kids alone is the last thing I want to do.
“I want to see my trio all reach 18 and so I live in hope.”
Geoff, 70, is liaising with medics at Boston’s Massachusetts General
Hospital, one of 25 US centres trialling the drug, to have it shipped to Britain. It will cost thousands but the family aim to pay for it from money raised by well-wishers.
The treatment, due for approval by US watchdog the Food and Drug Administration, may also prove a lifeline for 5,000 Brits with MND, which affects about two in every 100,000 people each year.
Retired management consultant Geoff, of
Castleford, said: “I believe we’re in touching distance of a cure.
“I’ve read all about this drug and it seems to have had incredible results in keeping people alive in the trials. This could be Rob’s chance until a cure is found.
Geoff movingly described how he keeps Rob going with a daily four-word mantra.
“I put my hands on his shoulders and say, ‘We can, we will’. Rob tells me to face the facts – there is no cure. I reply that those facts are old news – there has been little MND treatment progress in three decades. Who knows what tomorrow will discover?
“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.”
Rob has twice weekly specialist treatment to stimulate his muscles.
He wears a Mollii suit which sends electrical signals to his muscles via 58 electrodes inside the garment.
Geoff said last week Rob was able to slightly move his arm and shake hands with a well-wisher after his session.
The Burrow family is also raising £5million to set up an MND centre of excellence at Leeds Seacroft Hospital named after Rob, which will support patients, their families and carers.
On Tuesday, Rob and fellow sportsman and MND sufferer Doddie Weir, 51, will hand a petition to Downing Street calling for more funding into MND research.