I was by Rob’s bed when he gave me a sign he couldn’t go on… holding him as he passed was agony, says Lindsey Burrow

IT was the moment Lindsey Burrow knew that her rugby hero husband had succumbed to the disease that left him a prisoner in his own body. Trapped in a silent world, unable to communicate and ­paralysed by motor neurone ­disease, Rob, 41, lay hooked up to a hospital ventilator after developing pneumonia. The sportsman, who helped raise more than £20million for MND charities after being diagnosed with the devastating condition four years earlier, was determinedly refusing medication, physio or even a sip of water.

With her heart breaking, Lindsey took a deep breath and asked her childhood sweetheart: “Rob, I know you’re really tired. Have you had enough?”. After a few moments, punctuated only by the whirring of ­hospital machines, Rob cast his eyes to the left. It was his simple way of communicating — left for yes, right for no. The man who had stormed rugby league as its smallest player at 5ft 5in, who had put himself front and centre to raise awareness of MND, hiding his pain behind a trademark smile, could go on no longer.

“I wanted to cry,” says Lindsey. “I knew what I was asking and I needed to know that it was really what he wanted. “I just held him in my arms for a long time until he fell asleep. I thought I might howl with the pain but he’d had enough. He’d fought his battle.”. In an exclusive interview with The Sun, Lindsey today reveals her family’s last days with Rob, who became the face of MND, a rare condition that affects the brain and nerves, causing weakness and muscle-wasting.

Despite their sorrow, she tells how the family were able to make eternal, poignant memories in the days leading up to Rob’s death on June 2 last year. The night before Rob died, Lindsey placed a DVD player in his room at Pinderfields Hospital in Wakefield, West Yorks, so they could watch their wedding video one final time. On the TV Lindsey looked resplendent in a white gown and tiara as she and Rob whirled their way through their first dance, (I’ve Had) The Time Of My Life, from the movie Dirty Dancing.

Then the couple’s children, Macy, 13, Maya, nine, and Jackson, six, gently painted their dad’s fingers with rainbow-coloured ink so they could capture his imprints for memory books. Lindsey, 42, says: “We found a way to make those last hours memorable. “Rob and I, with his mum Irene and sisters Claire and Joanne, watched our wedding video and we teased him about his dancing. “The girls were at a musical show they had spent months rehearsing. Rob had indicated he still wanted them to go.

“When they came back, the girls and Jackson sat with their dad as he watched a recording of their performances. “It really lifted Rob. He had a big smile, watching the girls on stage, and they came back from the show that night and painted his fingers. Rob was very drowsy but was still with us. He just wanted to spend as long as he could with the children. “Macy made a little tree picture out of his fingerprints. The nurses had given the children tiny knitted hearts and bears which they used to surround his tree.

“He still managed to smile right to the very end. He always had that infectious smile and just set an example to us all — he gave hope to so many.”. Lindsey has written a book about her life with Rob, called Take Care, which is being exclusively serialised in The Sun. It seemed unimaginable to the couple’s families that Rob, the indomitable scrum-half for Leeds Rhinos, could fall victim to such a terrible condition, so his diagnosis in December 2019 came as a massive shock.

He was 37 with three children under the age of eight when told he might have only two years to live. The causes of MND are largely unknown — something Rob became keenly aware of after his diagnosis, pushing himself uncomfortably into the public eye to raise awareness. I thought I might howl with the pain but he’d had enough. He’d fought his battle. Within weeks of his diagnosis, he “banked” recordings of his voice for a synthetic speech machine so he could communicate with loved ones.

Operated by eye movements, it was similar to that used by fellow MND sufferer Professor Stephen Hawking. Rob’s courage saw him awarded an MBE in 2022 and he and rugby pal Kevin Sinfield, who has run thousands of miles to fundraise for research and patient support, received CBE honours from Prince William in January last year. In May 2023, the friends shared an incredible moment when Kevin pushed his pal around the Leeds Marathon course before carrying him over the finishing line.

The images went around the world, becoming a symbol of enduring hope, and Lindsey says: “Rob was really brave and courageous to share his story. “He was such a private family man, so for him to open his doors and let the world see just how brutal MND is — it takes a really rare ­person to do that. “He wanted to do it to raise awareness for the bricklayer, the postman, for the people who had the disease but didn’t have a voice.”.