Seeing a friend suffer is really tough. More so when you feel, and are, completely powerless to what is happening to them.
It’s been absolutely heartbreaking to watch Motor Neurone Disease take hold of Rob Burrow since his devastating diagnosis, and so difficult to know how best to support him through it.
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Rob is a treasured friend. He is an absolutely wonderful human being who I feel so fortunate to have in my life. As a player for my club, I idolised him. As a colleague through work, I respected him. As a friend through life, I have been in awe of him.
When we met up in early 2020, shortly after his brave decision to go public with the diagnosis at the end of 2019, Rob was still very much ‘the old Rob’. Drove to meet me, cracked endless jokes, paid the bill and drove home. The only sign of illness was a slight gravelly voice.
A few weeks later when we caught up again Rob’s walking was becoming a bit impaired.
The next time we met up after that, Rob’s dad Geoff had to drive him, and we took an armpit each to lift Rob out of the car and into Starbucks.
The next time after that, Rob was in a wheelchair.
We were still able to enjoy a weekly Wednesday FaceTime through the first lockdown, a time when Rob and the family should have been off making memories far afield, not trapped in their home. But even that became difficult with his failing voice. One sunny afternoon Rob was struggling badly with his speech, and described it as a bad day. He had to cut the call short, messaged immediately to apologise, and would call back in a day or two when his voice stabilised. That was the last time we were able to talk to each other, last summer.
Since then Rob had relied on Eyegaze technology to send texts and chat through the voicebank that he has recorded on a computer screen. He is basically blinking at words on the screen to type out a sentence in his own pre-recorded voice. We catch up probably once a month, either at his home or his parents, and just laugh, via a computer. His body has now pretty much universally failed him, and he is just trapped by this devastating disease, completely reliant on his incredible wife Lindsey and their brilliant family.
As friends, all we’ve been able to do is to keep laughing with Rob. And he has made that easy. Throughout everything that this horrific illness has thrown at him, Rob has maintained his mischievous and razor sharp humour, positive mindset and instinctive selflessness. On every visit, he wants to know about you, how you are doing, how he can help you, can I lend you money? Not a word about his plight, the horrendously unfair cards he has been dealt. Why me? Why not me…
Even while faced with his own impossible battles, Rob has been an unwaveringly supportive friend.
As friends it has been tough to know what we can do to soften the suffering that Rob is experiencing. His own mindset has made it easy for us I think – good company, laughs and normality have become precious, and we can absolutely provide a bottomless supply of that!
But now we know there is one more thing we can do, with Rob’s dream to help raise £5million for Leeds Hospitals Charity to build the Rob Burrow Centre for Motor Neurone Disease.
Rob would be honoured if his incredible legacy could include a specialist centre in his name, which would see all MND services housed under one roof for the first time, to give people living with MND the best possible quality of life.
I will be running the Manchester Marathon for my friend on October 10th 2021, to raise awareness of MND, and hopefully raise funds to build his hospital.
If you are able to donate anything, I can guarantee you it would mean the world to a lot of people x
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Thank you for reading this far.