The morning after his death, diggers moved in and work began. In Leeds, the first spade went into the ground for a specialist centre carrying his name. It said everything about Rob Burrow’s impact that momentum didn’t stop when he did. For Lindsey Burrow, that same day was also a moment to speak plainly about what the world rarely sees: the quiet, relentless work of caring for someone you love.

Lindsey calls it a privilege. It’s a line she repeats without flinching, even as she admits the harder parts. Caring can be lonely. It can be isolating. She lived both truths at once as she looked after her husband — the Leeds Rhinos great, a father of three, a driving force in the fight against motor neurone disease — through four and a half years with MND.

Rob died in June 2024 at 41. By then, the couple had invited the public into their story, not for sympathy, but to pull back the curtain on what MND actually does to a family. He had spent his entire professional career with Leeds, almost 500 appearances, trophies, internationals, and a standing in rugby league that few disputed. After his diagnosis in 2019, their world narrowed to the essentials: treatment, time, and finding a way to keep being a family.

“I was very honored that I got the privilege of looking after Rob,” Lindsey said, before adding the bit that often goes unsaid: the long evenings, the frayed nerves, and the weight of decisions that never stop. Rob saw it too. “I’m not here without her sacrifice,” he said — a rare window into what carers shoulder behind closed doors.

Her new book, Take Care, is an attempt to put all of that on the page. It’s a love story, but it’s also a manual for reality: the planning, the appointments, the logistics, the emotional toll, and the small moments that still make a day feel worth it. The Prince of Wales wrote the foreword, a gesture that reflects how far the Burrows’ story traveled, and how many people it reached beyond sport.

Care, love, and the cost of MND

MND is a progressive, life-shortening condition that strips away movement and speech while leaving the mind intact. Families quickly become care teams. In the Burrows’ house, that meant learning new routines and new technology to help Rob communicate, and building days around energy, safety, and comfort. It also meant juggling work and parenting with an illness that doesn’t pause.

Lindsey’s description of caring is calm, never dramatic, and it lands because it’s matter-of-fact. The job is planning the next hour, and the next, without losing sight of the person in front of you. There are good days when the family rhythm holds, and hard days when even simple tasks feel like uphill climbs. She doesn’t hide the personal cost, but she doesn’t center it either. The focus stays on dignity and togetherness.

One of the hard truths in Take Care is how easily carers slip into the background. Appointments revolve around the patient, systems focus on symptoms, and the person doing the lifting, turning, washing, speaking, coaxing, and monitoring often becomes invisible. Lindsey wants that to change. Her book puts the carer in the frame, not as a hero, but as part of the care plan who needs training, time off, and a voice in decisions.

She writes about the long-distance marathon of MND — not just the disease, but the logistics: when to introduce certain equipment, how to adapt the house, how to talk to children about a condition that is getting worse. There’s relief in precision. When families know what’s coming next, they can prepare, and when they know what resources exist, they can ask.

Rob understood the power of visibility. That’s why he and Lindsey shared their life so openly on camera. There was no voyeurism to it; the idea was simple and brave: show the truth, raise money, push research, and make life easier for the next family that gets this diagnosis. By the time he died, more than £6 million had been raised for MND causes linked to his name.

Their advocacy came with a purpose-built end goal: a centre that gathers care under one roof. In practice, that means shortening the maze. A place where people can see clinicians, get therapy, trial assistive tech, talk to benefits advisors, and access support groups, without trekking across a city to stitch it together on their own. It’s why the Rob Burrow Centre for Motor Neurone Disease matters. Construction began the day after he died. Doors are expected to open in 2025.

That timeline says a lot about the sustained push behind the project. Fundraising drives included the Leeds Half Marathon pairing with the Rob Burrow Leeds Marathon — an event that brought thousands onto the streets, united by a cause more than a finish time. The point was always two-fold: raise money, but also send a message that the MND community wasn’t fringe. It was front and centre.

Leeds Rhinos fans know that Rob’s legacy can’t be boxed into one area. It spans the game and the illness that reshaped his life. The Rugby Football League instituted the Rob Burrow Award for the Grand Final’s player of the match, a marker that his name now lives where he excelled. It’s less about sentiment and more about a standard — the way he played, the tenacity, the craft, the timing, the will.

A legacy built on action

Rob’s career reads like a highlight reel compressed into a five-foot-five frame. He became one of the most decorated players in Super League history, a playmaker whose size never stopped him carving up defences. But what came after his diagnosis is what pushed his name beyond rugby league. He became a campaigner, often with Lindsey right beside him.

Their documentaries — produced with BBC Breakfast — put cameras and microphones where most families would prefer privacy. It wasn’t an easy choice. But because they did, the conversation around MND changed. Viewers didn’t just hear about symptoms. They saw what it meant when speech fades, when eating becomes difficult, when breathing needs support, and when a partner’s hands make the difference between a bad day and a manageable one.

That work is still being recognised. Rob’s third and final film, There’s Only One Rob Burrow, was broadcast days after his death at his request and included a final message even some family and friends hadn’t heard. It has been nominated for the National Television Awards in the Authored Documentary category. It’s the third time documentaries charting his journey have made that shortlist. The category honours films shaped by their subjects; in this case, by a family telling the truth on purpose.

The honours came from the state as well as the screen. Rob was appointed MBE in 2021 for services to rugby league and the MND community, then promoted to CBE in 2024 for his work in MND awareness. These aren’t ceremonial footnotes. They mark a period when public understanding moved — and Rob and Lindsey were central to that shift.

They weren’t alone. Friends rallied, notably former teammate Kevin Sinfield, whose endurance runs pulled in donations and kept MND on the news agenda. The network mattered. It meant momentum didn’t rely on one voice or one body; it spread across communities, clubs, and cities. When Rob couldn’t speak easily, others picked up the mic.

What Lindsey has built since his death continues that arc. She’s still fundraising, planning two marathons in two weeks to support the Rob Burrow Centre for MND and the Leeds Rhinos Foundation. The task isn’t symbolic. It’s practical. Money accelerates build schedules, equips therapy rooms, and funds specialist roles. Each race entry, each donation, translates into something tangible inside a clinic.

Take Care also lands at a moment when the language around carers is catching up with reality. “Unpaid carer” sounds simple. The job isn’t. It’s medical coordination, manual handling, medication timing, symptom spotting, form filling, and emotional labour, all while trying to keep family life intact. Lindsey doesn’t romanticise any of that. She gives it shape, and in doing so, she gives other carers permission to speak up.

Her account emphasises planning without panic: learning the next piece of kit before you need it, asking for help before exhaustion sets in, speaking to employers early, and keeping communication open with children in age-appropriate ways. In MND, certainty is rare. Preparation is power. Families who understand the path can bend it a little — make it kinder, less chaotic.

The book is also about love that adapts. When speech goes, you find other ways to talk. When walking goes, you change the route. When independence fades, you draw new lines that protect dignity. Lindsey’s voice carries the weight of that work but also the light in it: meals together, quiet jokes, the kids’ stories at bedtime, the rituals that say “we’re still us.”

The centre taking shape in Leeds will bear Rob’s name, but its purpose is Lindsey’s through and through: bring care closer, make systems simpler, shorten the time between a need and the help that meets it. Clinics like this can change the day-to-day for families — fewer journeys, more joined-up appointments, spaces that recognise both patient and carer as part of the same story.

None of this rewrites what happened to the Burrows. It does change what might happen to those who come after them. That’s the point of a legacy worth the word: not the statue or the ceremony, but the shift in how people are treated and how quickly help arrives. Rob’s name carried force while he was alive. The work attached to it is designed to outlast him.

Lindsey speaks about pride without leaning into myth. She is proud of the awareness raised, proud of the money moved, proud that her husband’s story travelled so far that a future king chose to introduce her book. But she is also proud in a simpler way: that they kept going, kept parenting, kept laughing, and kept choosing each other amid a disease that takes and takes.

The next dates in the diary are races. She’ll lace up, run, recover, and run again. Another day, another mile, another fundraiser. It’s the same rhythm that carried them through hospitals and home care — steady steps, no shortcuts, purpose over spectacle. For Lindsey, the finish line isn’t applause. It’s a centre with open doors and families walking in to find the help they need.