IN 2019, former professional rugby player Rob Burrow was diagnosed with the incurable condition motor neurone disease.
This Father’s Day, his wife Lindsey, 40, shares how his positivity and courage continue to inspire her and their children.
“Watching Rob with our children as they gathered around his wheelchair to show him the Father’s Day cards they’d made at school, I knew it was a bittersweet moment for him.
Being a dad is what keeps Rob going.
It’s why he continues to fight so hard against motor neurone disease (MND), defying the devastating prognosis he was given in December 2019 that he only had a couple of years to live.
Yet, days like today – his fourth Father’s Day since he was diagnosed – leave him asking himself: “How long do I have left with my children?”
Rob, 40, and I met in 1996 when we were both 15, and we married a decade later in 2006.
I loved his gentle nature, great sense of humour and down-to-earth attitude.
Having a family was always part of the plan and Rob couldn’t wait to be a dad.
When our children, Macy, 11, Maya, eight, and Jackson, four, were born, Rob threw himself into fatherhood, alongside his career as a professional rugby player for Leeds Rhinos, and later as a coach.
On the pitch he was tough, but at home he’d change nappies and cuddle the children while reading them stories.
He’d think nothing of going along to a toddler group and being the only man there, chatting with mums over a coffee.
When Rob’s speech began to slur in late 2019, his rugby club doctor referred him to a neurologist.
We were both worried from the outset and I even asked the consultant if it could be MND, as I knew about the condition –which damages the nervous system and is incurable – through my work as a physio.
However, when an MRI and blood tests came back normal, the doctor reassured us he didn’t believe it was MND, but said it could be another treatable condition that affects speech muscles.
Rob had further tests, and when we went together for an appointment with the consultant again just before Christmas that year, we were feeling quite optimistic.
Hearing the words “motor neurone disease” and “two years to live” blindsided us both.
I fell apart – I had witnessed first-hand the unstoppable devastation MND causes.
Rob was calmer and said he was relieved it was him, and not me or the children.
He insisted he was going to fight as hard as he could to live as long as possible – he simply refused to accept that in a few years, he wouldn’t be around.
I don’t know if his positive mindset was down to his sporting career, but I’d never seen him as determined as on that day.
We drove home in shock to tell our parents, who were all crushed by the news, and after a sleepless night, we sat down with Macy and Maya, then eight and four, to tell them.
Jackson was only one, and too young to understand.
We told the girls Daddy had something that would make his body poorly.
Our younger daughter Maya said it was “boring” and carried on playing, but Macy had questions, including: “Will Daddy get better?”
We didn’t want to lie, so simply said that doctors were doing everything they could.
At that time, Rob was still physically fine, coaching rugby and doing the school runs.
I knew it was impossible for the children to appreciate how their strong daddy, who loved to throw them up on his shoulders and tuck them into bed at night, was going to change.
As Rob and I began to come to terms with what we were dealing with, his greatest wish was for life to remain as normal and happy as possible.
However, by the one-year anniversary of his diagnosis, Rob was frail and unsteady on his feet, and he had lost the use of his voice.
Thankfully, earlier that year, he’d had an artificial voice created for him using examples of his own voice.
This meant he could speak via a computer and still sound almost exactly like himself.
One of the most important reasons he’d done that was so he could say “I love you” to us.
By the second anniversary, he was a full-time wheelchair user and needed his food mashed or puréed because his ability to swallow was affected.
Today, three-and-a-half years on from Rob’s diagnosis, he needs full-time care, which I provide, alongside working for the NHS, plus our parents help too.
We both want to keep our family home as normal as possible for the kids without carers coming in and out every day.
We were lucky to already have a downstairs bathroom and bedroom for Rob to use, and space for his wheelchair.
Children are so adaptable, and I think because the changes in Rob were gradual, they’ve just accepted them, and now it’s the norm that Daddy uses a wheelchair and needs help with things like getting dressed and eating at mealtimes.
Our son Jackson has never known any different, and I know that’s hard for Rob because, unlike the girls, his son has no memories of him as he once was.
An outsider may look at Rob and think he’s no longer capable of playing an active role in family life, but he does.
He’ll watch movies with the kids, listen to them reading and, if they’re naughty, give them a telling off using his voice computer.
When we can, we grab the chance to make special memories, like going to Disneyland Paris last year.
But simple things, such as having our families over for a meal or a trip to the local park, are just as precious.
Last month, we both took part in the inaugural Rob Burrow Leeds Marathon, to raise funds to build a specialist MND care centre in the city.
I ran and Rob was pushed round the route by some of his former teammates, including Kevin Sinfield, who carried Rob over the finish line.
Kevin has raised millions of pounds for MND research and been a true friend.
That was a day of wonderful memories for us all, and the kids were really proud.
Rob remains so strong mentally.
The children never see him asking: “Why me?”, and that inspires them to carry on enjoying their lives, which is all he wants.
As they get older, they’re able to recognise just how incredible their dad’s attitude to his condition is, and the children call him their hero.
I see Rob’s private moments of sadness, though, when he wants to be able to chase the children round the garden like he used to, for example.
These moments are fleeting, but he’s only human and I know underneath his upbeat personality there’s the man who’s been robbed of the simple pleasures other dads take for granted.
It’s impossible to think of a life without Rob. He’s the only man I’ve ever loved.
I never imagined that one day I would have to raise our family without him. It’s something I try not to dwell on.
I prefer to cherish the present, rather than think about what lies ahead in the future.
He’s had such a successful career and, since his diagnosis, Rob has helped raise millions for research into MND and awareness of the condition, but his greatest legacy will be his children.
At some point in their future, they’ll look back at this time and know their dad faced this cruel disease with courage and positivity, and that he fought with everything he had to stay with them as long as possible.
I hope, as they grow up, they are inspired to be just like him, treasuring life and facing adversity head-on.
They couldn’t wish for a more incredible dad – and I couldn’t have chosen a better father for my children.
