Rob and Lindsey speak to Michael Billington
The former Leeds Rhinos player, 39, continues to defy expectations after being given two years to live when he was diagnosed in December 2019.
But he says he has struggled with the impact the condition has had on his relationship with his children – ten-year-old Macy, Maya, six, and three-year-old Jackson.
He said: "The hardest part is not being able to have the kids on my own, especially Jackson. He has no idea how it feels to be alone with his dad.
"I am thrilled with the front cover of my book because it shows me carrying him and that is massively important to me."
Rob, who played almost 500 times for the Rhinos over a 16-year period, is married to his teenage sweetheart, Lindsey. They have campaigned to raise awareness about MND since his diagnosis.
Opening up about her husband's condition, Lindsey said she doubted Rob would see his 39th birthday, last September, after his condition began rapidly deteriorating during lockdown.
She said: "I think to be told that your husband and father of three children has a year-to-two years to live, which is what we were told back in December 2019, is absolutely devastating.
"But Rob's still here and he's still got a smile on his face. He's still defying the odds. He won't give up until his last breath."
In the last few months, Rob's health has begun to stabilise and he says he feels much better than he was.
Speaking to ITV News through a specially designed app, ahead of the release of the paperback version of his book titled Too Many Reasons To Live, he added: "I'm feeling mighty fine, I've not felt any worse for over a year. I'm getting used to being as I am now. I'm used to my routine and I'm a professional TV watcher."
The family are spearheading a £5million appeal to build an MND centre in Leeds, which has seen Rob's former team-mate and good friend, Kevin Sinfield, undertake a series of gruelling challenges, which has already raised millions for research into the condition.
Rob and Lindsey say they continue to be surprised by the support they have received as a family and the amount of money that has been raised for the Motor Neurone Disease Association.
Lindsey said: "I want to thank all those people that go to efforts - whether it's having a cake stall, doing a raffle, running 101 miles. Whatever that may be, we're just so incredibly grateful for all the effort. It's really making a difference to people with MND."
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