Winning National Television Award for their documentary about Motor Neurone Disease fight could lead to cure says Rob Burrow and wife Lindsey
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The ‘celebrity’ set is not something he and wife Lindsey lead and is certainly not one that they aspire to - or probably even want.
But, like many other twists and turns that the devoted couple have taken in the last two years - it is all part of the hardest game one of rugby’s most decorated characters will ever play in.
A documentary, “Rob Burrow: My Year with MND”, filmed by the BBC about his battle with Motor Neurone Disease (MND) was watched by more than two million people when it aired in October last year, and has been shortlisted for the Authored Documentary category at this year’s National Television Awards, which will be held tonight (Thursday), and the winners decided via a public vote, which you can still influence.
With their celebrity spotting and excited daughters Macey and Maya in tow, they will be at the O2 in London tonight along with stars from Love Island, Bridgerton, Normal People, Britain’s Got Talent, Strictly Come Dancing, Ant and Dec, Emmerdale, Coronation Street and many more.
The couple are overwhelmed that they even made the long-list and have a sense that their place amongst the finalists - alongside documentaries made by footballer Marcus Rashford, DJ Roman Kemp, broadcaster Kate Garroway and reality TV star and former glamour model Katie Price - is undeserved.
At their family home in West Yorkshire earlier this week she revealed: “This is so not me, I am just a school mum. We are both working class. Doing all this and interviews is well out of my comfort zone. I hate it.
“We did not live extravagant lifestyles, we are just what you see and what you get - ordinary people. We are just Lindsey and Rob at the end of the day. If it helps people it is worth it. Me doing an interview is nothing to what Rob faces so I need to man up.”
“You speak very well”, he tells her using his Eye Gaze app - technology which follows his eyes and acts as a mouse to reproduce words and letters he wants to say and are spoken using recordings of his own voice.
While there is inevitably a delay in the words as his eyes do the work, they are lightning quick to cast her an adoring gaze in the same way he has been doing since they were 15 years-old. He knows what she is doing for him and their three children Macey, Maya and toddler, Jackson.
Every day life
She still works as a physiotherapist, looking after three children, doing the school run, food shopping, coordinating logistics of going to events, going suit shopping for tonight’s award all the while making sure the children still do ‘normal things’ such as drama classes and birthday parties, while caring for Rob at home and doing everything she can, with the rest of the family, to raise awareness and change the outcomes of MND.
That has also involved completing The Three Peaks challenge in under ten hours and will include The Great North Run later this month.
In a rare show of inevitability about the devastating reality of her own future, Lindsey whispers: "It keeps me going, it is a distraction because you don't have time to think 'this is my life'. It is those quiet times when it hits you."
Still the couple seem bewildered by the affection they have received from the public in their efforts to make real changes to the way MND is tackled in this country.
Lindsey said: “I thought they were coming to tell us we had won a holiday. Never in a million years did we expect to make the shortlist. Think of the people that have not been called like Rio Ferdinand or Little Mix, so to get short-listed is amazing in itself but to be up against those others in the category - it is testament to Rob and what he has done in terms of raising awareness and telling his story because it would have been easier to stay behind closed doors.
“We told the family, then it was telling the kids and then it was publicly announced. The BBC wanted to tell the story but we never set out with this intention. I am sick of seeing us on TV, we think people must be fed up.
“We did not set out to raise awareness or do this and that. It escalated as a result of the documentary and when you see you are having a positive effect on people’s lives, it fuels you to do more.”
That was also fuelled by anger. Anger that medical experts, and in Leeds there are some of the very best in the world, didn’t have the answers to their questions.
MND affects the brain and nerves and causes muscles to become weak and eventually stop working. It is a rare and complex condition and there are around 5,000 people in the UK that have it.
MND affects walking, talking, eating and breathing. It is life-shortening and there is no cure.
Lindsey said: “It was ‘this is what you have got and we will put you in touch with the palliative care team for symptom management’. There has been one drug licensed in 30 years. With advances in medicine, why is there no better treatment for MND?
“It is such a cruel disease and he wanted to show that side, make people realise how it takes away your independence and leaves you in a body that just does not work.
“The response has been quite overwhelming at times with people coming up to us, offering support, saying “you are an inspiration”. I can’t thank them enough and people ask how do we stay so positive but that is down to people’s well-wishes, all the fund-raising that has been done in Rob’s name.
“It is really humbling and heart-warming. You say thankyou to people but it does not sound enough. We are really grateful for everybody’s support - it restores your faith in humanity.”
A lot of what the Burrow family has been involved in since Rob’s diagnosis in December 2019 has been on the back of the documentary.
He has written a book, “Too Many Reasons To Live” based upon his extraordinary playing career and his battle with MND, which has topped the Sunday Times bestseller list and this week it was announced that he is backing a £5m fund-raising appeal to build a state-of-the-art centre in Leeds to support others with the life-limiting condition. It will be the Rob Burrow Motor Neurone Disease (MND) Care Centre at Seacroft where he and around 80 other people who have the disease currently receive treatment.
This week he has also become one of the leading figures backing a campaign calling for £50million from the government to create, over five years, a "game changing" MND Research Institute.
"This is my job now"
While Leeds Rhinos fans will never forget his work on the pitch, Rob, who turns 39 in a few weeks time - is gaining another army of fans.
He said: “I’m so happy when people come up to me and wish me well. It shows how much support I have behind me and that makes me feel like I’ve had the best game.
“I am now more well known than I have ever been. I am not really bothered about rugby league being secondary to my fight with MND. I’m just happy to be helping other sufferers. It feels like this is my job now - to continue to raise awareness of this cruel disease.
“The documentary and book exceeded my expectations. I still can’t believe all the lovely comments and messages of support I have received since my diagnosis. It reaffirms that rugby league may not be the biggest sport but it is the best for the community aspect. When one of its soldiers is down, the sport shines through.”
Without the documentary and noise around MND that followed, he thoroughly believes that the developments at Seacroft hospital or the government lobbying wouldn’t have happened.
He also believes that by winning the category at this evening’s awards and the further attention that MND will get as a result - it will lead to better treatment, and if not in his own lifetime, but eventually, a cure.
It is a very different life that the couple expected to live post rugby retirement but are tackling MND with as much effort as he would any Super League or Challenge Cup final.
A steely glaze temporarily replaces “the school mum” exterior for a moment and Lindsey adds, “being positive will keep him going and will keep him fighting until his last breath.”
She says: “I would give everything up to have Rob’s health and have him as Rob the dad and ex rugby player, but it is what it is. We can’t change the diagnosis but what we can do is help other people in that situation.
“It would be amazing to win (even though they have no speech prepared), not for the win but awareness for people that don’t have this platform or this voice - it would be for them.”
How to vote
You can vote for Rob Burrow: My Year with MND until noon today (Thursday).
Visit the link here: www.nationaltvawards.com/vote