IN 2019, former professional rugby player Rob Burrow was diagnosed with terminal motor neuron disease.
This Father’s Day, his wife Lindsey, 40, shares how his positivity and courage continues to inspire her and their children.
“Watching Rob with our kids gather around his wheelchair to show him the Father’s Day cards they made at school, I knew it was a bittersweet moment for him.
Being a father is what keeps Rob alive.
That’s why he continues to fight motor neuron disease (MND) so hard, defying the devastating prognosis he was given in December 2019 that he had just a few years to live.
But days like this—his fourth Father’s Day since his diagnosis—make him wonder, “How much longer do I have with my kids?”
Rob, 40, and I met in 1996 when we were both 15 and married a decade later in 2006.
I loved his gentle manner, great sense of humor and down to earth attitude.
Starting a family was always part of the plan and Rob couldn’t wait to become a father.
When our children Macy (11), Maya (8) and Jackson (4) were born, Rob threw himself into fatherhood alongside his career as a professional rugby player for Leeds Rhinos and later as a coach.
He was tough on the field, but at home he changed diapers and cuddled the children while reading them stories.
He would have thought nothing of going to a toddler group and being the only man there talking to the mothers over coffee.
When Rob’s speech began to falter in late 2019, his rugby club doctor referred him to a neurologist.
We were both concerned from the start and I even asked the counselor if it could be MND as I knew about the condition, which damages the nervous system and is incurable, through my work as a physical therapist.
However, when an MRI and blood tests came back normal, the doctor reassured us that he didn’t think it was MND and that it could be another treatable condition affecting the muscles of speech.
Rob had further tests and when we made another appointment with the consultant just before Christmas this year we were quite optimistic.
When we heard the words “motor neuron disease” and “two years to live,” we were both stunned.
I broke down – I had witnessed firsthand the unstoppable havoc MND is wreaking.
Rob was calmer and said he was relieved it was him and not me or the kids.
He insisted he would fight as hard as he could to live as long as possible – he simply refused to accept that in a couple of years he would be gone.
I don’t know if his positive attitude is due to his sporting career, but I’ve never seen him so determined as he was that day.
We drove home in shock to tell our parents, who were all devastated by the news, and after a sleepless night we sat down with Macy and Maya, then eight and four years old, to tell them.
Jackson was only a year old and too young to understand.
We told the girls that dad had something that would harm his body.
Our younger daughter Maya said it was “boring” and continued playing, but Macy had questions including, “Will dad be better?”
We didn’t want to lie and just said that the doctors were doing everything they could.
At the time Rob was physically well, coaching rugby and running school runs.
I knew that the children could not imagine how their strong father, who liked to throw them on his shoulders and put them to bed at night, would change.
When Rob and I first started dealing with what we were dealing with, his greatest desire was for life to remain as normal and happy as possible.
But by the one year anniversary of his diagnosis, Rob was frail and unsteady on his feet and unable to use his voice.
Fortunately, earlier this year he had an artificial voice created using samples of his own voice.
This meant he could speak through a computer and still sound almost exactly like himself.
One of the main reasons for this was because he wanted to say “I love you” to us.
By the second anniversary, he was a full-time wheelchair user and required pureed or pureed food as his ability to swallow was impaired.
Now, three and a half years after Rob’s diagnosis, he needs full-time care, which I provide alongside my work for the NHS and helping our parents.
We both want our family home to remain as normal as possible for the children with no caregivers going in and out every day.
We were fortunate to already have a bathroom and bedroom for Rob on the ground floor and space for his wheelchair.
Kids are so adaptable and I think because Rob’s changes were gradual they just accepted them and now it’s the norm for dad to use a wheelchair and need help getting dressed and eating at mealtimes.
Our son Jackson has never known anything else and I know it’s hard for Rob because unlike the girls, his son has no memories of him as he used to be.
An outsider may look at Rob and think that he is no longer fit to play an active role in family life, but he does.
He watches films with the children, listens to them read to them and, if they are naughty, uses his voice computer to tell them what they want.
When we can, we take the chance to create special memories, such as a visit to Disneyland Paris last year.
But even simple things like visiting our families for dinner or a trip to the local park are just as valuable.
Last month we both ran the inaugural Rob Burrow Leeds Marathon to raise funds to build a specialist MND care center in the city.
I was running and Rob was being pushed around the track by some of his former teammates including Kevin Sinfield who was carrying Rob to the finish line.
Kevin has raised millions of pounds for MND research and has been a true friend.
It was a day full of wonderful memories for all of us and the children were really proud.
Rob remains mentally strong.
The kids never see him ask, “Why me?” and that inspires them to keep enjoying their lives, which is all he wants.
The older they get, the more they realize how incredible their father’s attitude towards his illness is, and the children call him their hero.
I do see Rob’s private moments of sadness though, like when he wants to chase the kids around the garden like he used to.
Those moments are fleeting, but he’s only human and I know that beneath his upbeat personality lies the man deprived of the simple pleasures that other fathers take for granted.
Life without Rob is unimaginable. He’s the only man I’ve ever loved.
I never thought that one day I would have to raise our family without him. It’s something I try not to think about.
I prefer to appreciate the present than to think about what lies in the future.
He’s had such a successful career and since his diagnosis Rob has helped raise millions to research MND and raise awareness of the disease, but his greatest legacy will be his children.
At some point in their future, they will look back on this time and know that their father faced this cruel disease with courage and confidence and that he fought with all his might to stay with them as long as possible.
I hope that as they grow up they will be inspired to be like him, to appreciate life and face adversity head-on.
You couldn’t have asked for a more incredible father – and I couldn’t have picked a better father for my children.