Importance of Leeds Hospitals Charity's Rob Burrow Centre for MND appeal outlined by mum who lost her son to the cruel condition

Jude de Vos likens losing her son Jody to a door slamming shut.

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The retired nurse from Holmfirth cared for her son as he suffered with motor neurone disease, the same condition Leeds Rhinos legend Rob Burrow MBE was diagnosed with in 2019. Jody de Vos, who had been living and working in Australia, died within 20 months of his diagnosis back home in England in 2017.

"You don't expect your child to die, it was absolutely heartbreaking,” Jude told the Yorkshire Evening Post. “It was like a door slammed shut. The patient had died, everyone went and I was alone.”

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Jude saw the devastating impact of MND up close and has thrown her weight behind the appeal for a specialist MND centre to be developed. She hopes the Rob Burrow Centre for MND will provide others with what she wished had been available to her and Jody.

Jude saw the devastating impact of MND up close and has thrown her weight behind the appeal for a specialist MND centre to be developed. Image: Lorne Campbell / GuzelianJude saw the devastating impact of MND up close and has thrown her weight behind the appeal for a specialist MND centre to be developed. Image: Lorne Campbell / Guzelian
Jude saw the devastating impact of MND up close and has thrown her weight behind the appeal for a specialist MND centre to be developed. Image: Lorne Campbell / Guzelian

“When it happened to my son, he was living in Australia and came home to live with me,” she said. “I'd only just moved to Yorkshire because my father had died and knew nobody. I, therefore, was going to Sheffield for this, Leeds for that, Elland for something else, people are going all over the place. With this centre, everything will be in one centre and all the support will be there.

"You'll have people around you who are also experiencing it, so you're not so isolated. There are an awful lot of people who live alone or maybe with one person, and nobody is even aware.

"It's about raising the benchmark that there are lots of isolated people living with MND and they need the support. One unit would be amazing, I wish it would have been there for Jody and I. It would have helped us emotionally as well as physically.”

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Care following a bereavement is something Jude believes a specialist MND centre would be able to provide, and something she feels particularly passionate about having felt “suicidal” following Jody’s death.

Jude climbed Ben Nevis in the summer and the mammoth challenge put over £5,000 towards the Rob Burrow Centre for MND appeal. Image: Lorne Campbell / GuzelianJude climbed Ben Nevis in the summer and the mammoth challenge put over £5,000 towards the Rob Burrow Centre for MND appeal. Image: Lorne Campbell / Guzelian
Jude climbed Ben Nevis in the summer and the mammoth challenge put over £5,000 towards the Rob Burrow Centre for MND appeal. Image: Lorne Campbell / Guzelian

"It was a nothingness,” she said. “There must be care afterwards, which you would get in a unit like this. I was suicidal and actually, two and a half years later, the paramedics and emergency teams were involved with me because I just didn't want to live. I found my way through walking and hiking. I hike a lot and when I heard about Rob Burrow, I decided I would climb Ben Nevis. It gave me a reason to live.”

As part of her efforts to raise both funds and awareness in the fight against MND, Jude climbed Ben Nevis in the summer and the mammoth challenge put over £5,000 towards the Rob Burrow Centre for MND appeal. She also features in an exhibition named ‘7 Stories of Motor Neurone Disease’ alongside others affected by MND including Rob Burrow MBE.

“My picture [in the exhibition] is of two trees,” she explained. “These trees are very special because Jody is buried under a magnolia tree in Australia. He's far away and I will visit when I can afford to go again, but I have two trees up in the moors in Yorkshire that are like mother and child, protecting each other.”

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Jude is keen to stress MND can also affect young adults and show people it is not an “old man’s disease”. “Jody was a young man, very fit, you sometimes believe with MND that it's going to be someone who is older but it affects young people as well,” she said. “Jody got it and he died within 20 months of his diagnosis. I want to tell his story and my story because I cared for him.

"It isn't an old man’s disease, it is horrific and families need supporting, but it's also very specialist, you need specialist nurses. It's very particular and everyone needs to be aware and raise funds."

The Samaritans helpline operates 24 hours a day and can provide support on 116 123.

Leeds Mind Suicide Bereavement Services offer compassionate support for people bereaved or affected by suicide, including if you:

· Have lost anyone to suicide, such as: a friend, colleague or family member; someone you know professionally or an acquaintance

· Think someone ended their own life, even if an inquest has not been held or did not determine suicide as cause of death

· Have been affected by suicide but do not identify as bereaved, e.g. if you witnessed a death, or were involved through your work

· Were affected by a suicide months, years or decades ago

Call 0113 305 5800 or email [email protected].