Lindsey Burrow has revealed how the family have been left humbled by the nationwide support both they and the MND community have received since Rob’s diagnosis.
The Leeds Rhinos legend was given the devastating diagnosis in December 2019 and given two years to live.
Lindsey has revealed her husband’s health has since stabilised after a dramatic early decline, and says the family has no regrets over going public with the illness given the increase in awareness and fundraising since.
“The support we have received gives us something to smile about,” she told Love Rugby League.
“Not just the big fundraisers with Kevin Sinfield but locally with cake stalls and school events too. It is all really humbling that people have been so nice.
“I keep thinking people will be fed up of seeing us on the TV but they just can’t do enough for us and we are so grateful.”
Lindsey Burrow to run Leeds Marathon for husband Rob
Lindsey will run the inaugural Rob Burrow Leeds Marathon in May and is squeezing the gruelling training around caring for Rob, being a mother to their three children Macy, Maya and Jackson, and her work as a physiotherapist.
The family try to keep life as normal as the illness allows. Rob was even able to enjoy a night out with friends at a Ricky Gervais show before Christmas.
It was the first time Burrow had been out without a family member as carer. It gave pals an insight into the daily task of communication with an MND suffer.
Burrow’s Eyegaze technology allows him to communicate via blinking at a screen which then delivers the words in his voice. Without it however, it can be incredibly frustrating to communicate what is wanted or required.
“I pretty much have a sixth sense now,” Lindsey added.
“I know what Rob wants as it’s usually an espresso, a Red Bull or the toilet!
“I’ve got my tick list, but Rob just gets on with things without a moan or complaint. I can’t sit still without itching my nose so I can’t imagine someone having to sit you up, feed you and do all of those things.
“I know he would do the same for me and he can’t help it that he needs that help. It is frustrating as he know what he wants or needs. He just can’t communicate whether he is too hot, too cold or needs the toilet. But I’m tuned in to know it now.”
Lindsey is running the Leeds Marathon to raise funds for the Leeds Hospitals Charity to build a specialist MND hospital in Rob’s name. To make a donation to her inspirational fundraising efforts, click here.