My husband Rob was a fit rugby champ…now he can’t even walk by himself due to motor neurone disease
LINDSEY BURROW is one of the lucky few women who found “the one” when she was a teenager.
But now, aged 37, she faces a future without her husband and the father of her three children Macy, eight, Maya, five, and one-year-old Jackson.
Last December, former Leeds Rhinos Rugby League player Rob Burrow, 38, was diagnosed with Motor Neurone Disease (MND).
It is a degenerative condition that affects how nerves in the brain and spinal cord function — and he was told he had just one to two years to live.
When Macy learned of her dad’s illness, she told Lindsey: “Mummy, I would give my voice to make Daddy better.”
Speaking exclusively to Fabulous, Lindsey, from Pontefract, West Yorks, says: “Rob and I were childhood sweethearts.
“We met when I was about 13 and I always knew he was the man I wanted to spend my life with.
“He’s the most kind-hearted, generous, caring, loving person, and very family oriented.
“He has always been the heart and soul of our family. He still is of course, but life is very different now. He needs help with pretty much everything.
“He can’t walk without a frame, needs help dressing, washing, eating and brushing his teeth. I suppose I’m his carer now, as well as his wife.
“But I love Rob as much as I ever have. Even more so now, watching how he fights against this disease. And the children love him so much.
“It’s hard to think about life without him. We don’t know how long we’ve got left together but we’re just treasuring all the time we do have.”
‘HEAD INJURIES’
Leeds legend Rob, who at 5ft 5in was known as the smallest player in the Super League, won the Challenge Cup twice, scoring a try in their 2015 win over Hull KR.
After retiring in 2017, he took on a coaching role at the club.
But gradual changes in his speech last year led him to be diagnosed with MND two weeks before Christmas.
Lindsey, a physiotherapist, says: “In August last year, after a presentation, someone asked Rob if he had been drinking because he was slurring his words. But Rob’s not a drinker.
“We were buying a new house too, and Rob couldn’t say the word ‘solicitor’.
“He was having quite a lot of pain from an old shoulder injury and changing medication, so we thought it might have been a side effect of that, and stress.
“He saw a doctor about his shoulder and happened to mention his speech. As a rugby player, Rob had had quite a few head injuries so they said they’d check it out.
“At first, everything seemed OK. The MRI and blood tests were normal. I’d been doing some Googling and had come across MND, but when I raised it with the consultant, he said it was really unlikely that Rob had it.
“That put our minds at rest. We thought we had been overthinking things, and that it was something that could be treated and we would be able to just carry on with our lives.
“But then, on December 12 — three days before Jackson’s first birthday — we had another appointment.
“We were laughing and joking in the waiting room because we just expected it to be routine. But then the consultant said that he was sorry, that it wasn’t good news.
“Some further nerve construction studies had shown abnormalities and that Rob had MND.
“I remember asking, ‘How long has he got?’. His answer was a year to two years. I just broke down. Rob took hold of my hand and said, ‘It’ll be all right. I’m fine’.
“But to me, it was the worst thing the doctor could have said.
“Rob and the kids absolutely idolise each other. He’s always been such a hands-on dad, taken them to playgroups and come home from training early to be with them.
“I’d think, ‘How long would he have left to do this with the kids? How were we going to tell them?’.
“As a physiotherapist, I’d seen patients with this condition and I knew how awful it could be.
“I wish the doctors had said anything else, something that could be treated. But they were talking about palliative care and symptom management. I couldn’t believe it was happening.”
Lindsey and Rob decided to wait until after Jackson’s birthday to tell the kids, but they broke the news to their parents first.
Lindsey says: “At Jackson’s party, Rob’s dad broke down.
“I had to walk away because that day was about Jackson. We want to make happy memories for him. Rob was very adamant about that.
“Telling the girls was very difficult. Maya said, ‘What are you telling us this for? It’s boring’, and carried on playing. Which made Rob laugh.
Macy said ‘Mummy I’d give my voice to make Daddy better’. It broke my heart.
Lindsey Burrow
“She was only four. But Macy, who was seven and is very sensitive, asked, ‘Will Daddy get better?’.
“A few months later, as she could see Rob was deteriorating, she told me, ‘Mummy, I would give my voice to make Daddy better’. It absolutely broke my heart. As a mum you want to protect your children.
“We just want them to have a normal, carefree, happy childhood.
Claims SIX lives daily
MOTOR Neurone Disease is a rapidly progressing disease that affects the brain and spinal cord, attacking the nerves that control movement so muscles no longer work. There is no cure.
It affects up to 5,000 adults in the UK at one time and kills six people per day.
Chris James, from the Motor Neurone Disease Association, said: “By talking so openly about MND and the way it is affecting them, Rob and his family are raising awareness of the disease and we are so grateful for that.
“We know that a combination of environmental and lifestyle factors act together with specific genes to predispose people to get MND. But, as yet, we don’t know how this triggers the onset of the disease.”
Symptoms happen gradually and can include: Weakness in ankle or leg, slurred speech, a weak grip, muscle cramps and twitches, weight loss and difficulty stopping yourself from crying or laughing in inappropriate situations.
For info and support, see mndassociation.org.
“I have worried about Jackson because he won’t have the memories of his dad that the girls will.
“I’m grateful there’s lots of footage of Rob playing rugby that they can watch. But we’re just trying to make as many happy memories as we can as a family.”
In January, Rob took part in a testimonial match for Leeds against Bradford Bulls.
Before the game, Rob walked on to the pitch with all three children, looking proud but incredibly emotional.
And as he came on to the field for the final five minutes Rob struggled to hold back the tears, knowing it would probably be the last time he played his beloved sport.
Lindsey says: “It was a really emotional day. I could see Rob was very emotional as he ran on to the field, and his team-mates hugged him.
“The support was overwhelming. It was the first time Rob had his three children with him on the pitch. It was a special moment for our family, and a moment we’ll treasure and remember.
“Up to the end of March, Rob was still coaching, still playing football with Jackson in the garden and putting the kids to bed. Since lockdown he has physically deteriorated.
“We have lots of family days out together and the kids find fun in silly things. We rented a mobility scooter for Rob and the kids absolutely loved it.
“Rob can’t read them bedtime stories any more because of his speech. He can’t change a nappy.
“Things we take for granted and see as a chore, he can’t do.
‘LIFE IS UNRECOGNISABLE NOW’
“Rob has always thought about other people more than he thinks about himself. I know in a heartbeat he would be there to help our family. But through no fault of his own he’s got this disease.
“In just a year, Rob’s deterioration has been a shock. I didn’t think that 12 months on he would be like this.”
Lindsey says Rob’s illness has reminded her how precious life is.
She says: “Looking back, everything in our life was perfect and it shows how quickly that can change. Life is just totally unrecognisable now.
My family alone are reason enough to fight on. They’re the main reason why I will never give in to MND.
Rob Burrow
“It doesn’t matter about money or holidays if you haven’t got your health. I’m guilty of taking things for granted, and something like this makes you appreciate life.
“Rob is fighting this disease with everything he’s got. That’s all you can do, and we’re fighting it together, as a family.
“We’ve used the last year to raise awareness of MND. We wanted to use his platform to do that.
“His consultant told us she’s had people coming to her saying, ‘I think I have got the Rob Burrow condition’.
“She said more people have been diagnosed because he is raising awareness of the condition.
Most read in Fabulous
“That’s an incredible achievement and I’m so proud of him for that, and for the man he is.”
Even though he could not attend in person, Rob was the Rugby Football League’s chief guest for Saturday’s Challenge Cup Final at Wembley, which fittingly Leeds Rhinos won 17-16 against Salford Red Devils.
Rob said: “My family alone are reason enough to fight on. Their love keeps me positive and strong. They’re the main reason why I will never give in to MND.
“Their happiness is paramount. If they’re happy, I’m happy.”
- Rob Burrow: My Year With MND is on BBC iPlayer.
GOT a story? RING The Sun on 0207 782 4104 or WHATSAPP on 07423720250 or EMAIL exclusive@the-sun.co.uk