My husband Rob Burrow is imprisoned by MND –but I’m so proud of him
In December 2019 Leeds Rhinos rugby legend Rob Burrow received a devastating diagnosis of Motor Neurone Disease. But the star hasn't shut himself away from the world.
Alongside sports icons Doddie Weir and Stephen Darby – both of whom live with MND – he's raised thousands of pounds to help raise awareness and find a cure for the life-shortening illness.
OK! was honoured to meet Rob and Lindsey at their home in Pontefract, Yorkshire. The couple, both 39, have three children: Macy, nine, Maya, six and two-year-old Jackson.
Here, Lindsey tells their heartbreaking story and Rob’s vow to never give up hope.
Christmas is coming but I’m full of worry, anxiously waiting with my husband Rob at the hospital for his test results. The consultant’s grave words cut through the silence, “I’m sorry to tell you that you have motor neurone disease.”
Words fall from my mouth. “Is there any chance it could be something else? How long has he got left?” The answer is no and he doesn’t know. There are no answers, no treatment and no cure. The shock crashes over me like a wave, but Rob gives my hand a squeeze. “It’s OK. Thank goodness it’s me and not you or the kids.”
That dreadful moment was two years ago in December 2019. Since then, life has been unrecognisable.
We met as kids. When I was 14, I stood him up on our first cinema date because Mum found out and I was embarrassed. He was already playing rugby having signed to Leeds Rhinos aged 12. Twenty one years after we started going out we remain very much in love. We know each other inside out.
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I knew Rob was The One. We married in 2006 and had our first child, Macy, in 2012, followed by Maya in 2015 and Jackson in 2018. We were so happy.
Rob retired in 2017, but remained as fit as a fiddle until August 2019 when we realised something was wrong. He made a speech at the rugby club and couldn’t say the word ‘solicited’.
People asked, “Rob, are you drunk?” But he wasn’t.
During my training as a physiotherapist I’d seen motor neurone disease patients with their failing bodies, unable to lift a hand or speak a word. “If there’s one disease I don’t want, it’s this one,” I thought.
I saw the signs of MND in Rob but prayed I was wrong. Rob was taking medication for a shoulder injury. Perhaps the side effects were causing his symptoms?
Because of his concussion history from rugby he was seen by a specialist within three weeks. Blood tests results and an MRI scan were normal, but then came the nerve conduction study (which shows nerve damage). Soon after, Rob received the shocking news of his diagnosis.
He drove us home from the hospital that day, because I was in bits. I felt so angry and my mind was racing. “How are we going to tell Rob’s parents? What about the kids? Why had it happened to Rob?”
He still puts it down to bad luck and we’ll never know why he’s got it.
We broke the news to Rob’s parents over the phone on the journey home. They were waiting for us at our house and broke down in our arms. The girls – Macy, then seven, and Maya, then four – had a swimming lesson that afternoon and somehow, on autopilot, I took them to the pool.
Days later we even threw a party for Jackson’s first birthday. We couldn’t cancel his day – Rob was adamant about making happy memories. At that point though, only our close family knew the devastating news. As the children ran around playing, I looked at Rob’s dad and saw tears in his eyes. I had to look away before I cried too.
I still struggle to accept my husband has a life-limiting condition. Rob was the one who looked after us. How could his body fail him?
But he said, “No more tears. MND is my toughest opponent and I’ll fight it with every last breath.”
Just before Christmas of 2019, we told the kids. I took a breath and said, “Doctors are doing everything they can, but Daddy won’t get better.”
Maya said, “Why are you telling us this? It’s boring!” That gave us a giggle. But Macy was upset. She cried and said, “I don’t want Daddy to die.”
I wanted to be Rob’s carer – I won’t let another person take care of my husband. However overwhelmed I am, I’m stubborn. “I’ll help you up the stairs,” I swear to Rob. “Even if it kills me. We won’t give in.”
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In the summer of 2020, Rob lost his voice. He used to be so jovial and banter with the lads. Now it takes ages for him to type answers with his eye gaze machine, which uses Rob’s voice from old rugby interviews. But often he doesn’t need to communicate – after 21 years together, I know him so well.
By January of this year, he’d lost the use of his hands and arms. His legs are very weak now but he walks a lap of the house each day to stop getting stiff. It’s frustrating when strangers ask, “Can he understand us? Can he hear me?” Of course he can!
Rob is so strong. The only time he’s cried was on his 39th birthday in September this year, reading cards from the kids. I knew what he was thinking – that he might not see his 40th.
Life can feel tough. I wake up at 5am, care for Rob and the kids, go to work and squeeze in a gym class. Yet I’ve never had the slightest doubt Rob would do the same for me – that’s what love is. It’s night-time when it really hits me. I feel like screaming and sobbing into my pillow. This awful disease is going to take Rob away.
He is now imprisoned in his body. He can’t talk, walk or feed himself without my help.
I worry about leaving home alone, “What if he needs the toilet? What if he falls over?”
One day I was in the garden when I heard a loud thud. Rushing inside, I found Rob on the living room floor. I won’t let him walk alone now and I’m careful with food in case he chokes.
I utterly dread the day he dies, so I try to banish the thought.
MND doesn’t just affect the person who has it. Rob was such a hands-on dad.
I imagined him playing football with the kids and watching rugby together. They’ll be robbed of those memories. I worry about the kids and hope they’ll look back and feel proud of what their daddy has achieved.
Rob doesn’t have a wish list. He just wants to spend time with us. We’ve just met Father Christmas at Lapland UK and we’re having a Santa sleepover at Alton Towers before Christmas Day.
December is full of family birthdays, including Jackson’s third – he’s having a party at Diggerland – and Rob wants to be involved in it all.
On Christmas Day I’ll make sure Rob is downstairs before the kids get up and see their presents. He always liked to be at our tree first to “see if he’s been”. I’m clueless about gifts for boys so Rob will have a big say on what Santa brings Jackson. It’s the small things, like seeing the kids open their presents, that mean so much to Rob now. I can’t wait to see the joy on his face at seeing them happy.
We didn’t know much about MND before Rob’s diagnosis, but now thousands more are aware of the condition because of his hard work. I’m so proud of him.
In Rob’s words…
“I was shocked when the doctor told me I had MND because I felt so well. Lindsey has been amazing. She does so much for me. It’s been so tough on her, but MND has made us even closer.
I want to go into a hospice when the time comes. I don’t want my family being in the room where I died. I want them to live in this house forever. My bucket list is simple – time with my family.”
MND: The facts
Motor neurone disease causes messages from the motor neurones in the brain and spinal cord to gradually stop reaching the muscles. Muscles weaken, stiffen and waste, affecting how you walk, talk, eat, drink and breathe.
Symptoms include muscle weakness, cramps and spasms, speech and swallowing problems and breathing difficulties.
It can affect any adult at any age.
Most people are diagnosed over the age of 50. Men are at a slightly higher risk than women.
Life expectancy is on average two years from diagnosis, but can vary from six months to more than a decade.
There is no cure.
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