Grieving mum fundraises for 'amazing' Rob Burrow Centre for Motor Neurone Disease appeal in memory of son

Jude de Vos said she watched her son battle through the “road to hell” in what was a rapid decline after being given the devastating diagnosis of motor neurone disease (MND) in 2014.

Within a year, he was wheel-chair bound, unable to speak or swallow and he sadly died in January 2017, aged just 38.

“It was so intense,” Jude, a nurse, said. “Some people go through MND so rapidly, it’s distressing, it’s scary and frightening – the road to hell I called it.”

Before his diagnosis, Jody, who grew up on a farm in Ireland, had embarked on a career in travel and had visited every corner of the globe before falling in love with Australia where he finally emigrated.

It was in Sydney where doctors told him he had MND and he moved back to the UK to live with his mum in Holmfirth.

While caring for Jody 24/7, Jude was also trying to fulfil all her son’s wishes. She took him on day trips, on a family holiday to Cornwall, and even travelled with him to Berlin to see his idol, Madonna.

She went from a house full of intensity to the black hole of grief.

“After Jody died, my life wasn’t the same,” she said.

“After nine months I went back to work for another two years. But it broke my heart every day. I found it so hard. I’d bled myself dry of caring and love. Every patient I saw, I ended up sitting in my car sobbing, so I decided to retire.”

She said: “It’s probably the world’s worst devastation to lose a child, it’s a death that you’ll never get over. I felt this massive sense of isolation.”

Jude, wo also has two daughters, added: “Since then, it’s been a horrific time. It’s never quite stopped. It’s hard for me to say but two years ago, I was so suicidal. I felt so isolated. And I felt everyone’s life has gone back to normal, and I’d been through so much trauma.”

Because of the time of year Jody died, Christmas is a particularly hard time.

“This time of year, is the hardest time for me,” Jude says. “The night’s get shorter. I remember district nurses being in and out through the night. On top of that, there was a very real fear I was going to have a physical breakdown.”

When she looks at Rob Burrow, and the huge support around him, it highlights the importance of an MND centre that will give support to those who don’t have any, and feel quite isolated.

“There are many people who are experiencing MND in a very lonesome environment, or are very isolated, and who don’t have that support. I’m so thankful for him raising awareness, as there are a lot of people who are very lonely, very traumatised.”

When, this September she saw the launch of a Leeds Hospitals Charity's £5m appeal - backed by the Yorkshire Evening Post - to build the new Rob Burrow Centre for Motor Neurone Disease in Leeds, she said something switched.

“I thought it was the perfect thing to fundraise for. If only that had been there for Jody and I. We would have had support all in one place.

"That’s what we needed, some arms around us. If the centre had been there, there would have been the acknowledgement, the knowledge of the road he was on, and the trauma I was going through. It would have been the best thing, magnificent, I would have felt supported myself. I think I was very much unsupported. I was emotionally battered and drained.”

Jude has committed to climbing Ben Nevis in June next year to raise funds for the Appeal in memory of her son.

“It’s given me a new focus - of moving forward. Maybe we can find a cure or a cause? And what an amazing centre it’s going to be. Now, I’m looking forwards, rather than looking back. And I needed to look forward, to save my life.”

To sponsor Jude visit https://leedshospitalscharity.enthuse.com/pf/jude-de-vos-d181e-0ddc6-45b81

*This week the Yorkshire Evening Post and Leeds Hospitals Charity launched a campaign in the run-up to Christmas in a bid to get to the £5m needed to build the centre together as soon as possible – with the ultimate aim being that Rob Burrow will open the centre that is being named after him.

To donate or fundraise to help the appeal go to https://www.leedshospitalscharity.org.uk/Appeal/mnd-centre-appeal .

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