Jude’s son Jody died of MND in 2017, when he was aged 38. Since, Jude de Vos has climbed Ben Nevis to raise funds for the Rob Burrow Centre for MND appeal.

Just before Jody came into the world, I lived on the tiny island of Herm in the Channel Islands with my husband Steve, and two daughters, Emma and Anouk.

I was due to give birth in January. Storms hit. I managed to get a catamaran to Guernsey hospital, where Jody was born. A skipper and his wife took us in until he could get us back to Herm when the sea calmed. He spent the first few days of his life sleeping in their chest of drawers.

It was a Swallows and Amazon life. You could say Jody was born for adventure.

Later, I went to train as a nurse at Nottingham University. Jody grew up, and worked for Trailfinders and Flight Centre. He travelled the world.

In 2009, he took a gap year in Australia, fell in love with it, and in 2013 got a job there and emigrated. I’d moved by then to Holmfirth to be close to my very poorly elderly father, who died some months later. I took a job as a community nurse with Rotherham and Doncaster NHS.

Jody and I spoke on his way to work every day as he walked over Sydney bridge. He’d say, "morning mum the sun’s shining here, what’s it like in wet Yorkshire?"

Jody first started having problems with his wrist. Then his foot dragged.

After his MND diagnosis, I desperately wanted to go straight to Australia and see Jody immediately. But Jody insisted he needed some time first to take in his devastating diagnosis. I was desperate just to go and give him a huge hug and be there. He had already started having difficulty swallowing, and saying words.

When it was right for Jody, I flew over. He arranged time off work and we went back packing together. He wanted to make memories. The memories will be with me forever and ever. If we’d have left it three or four months, it would have been too late. He declined so rapidly.

He reluctantly moved to my home in Yorkshire, so I could care for him. His lungs began to deteriorate, but he kept his humour and spirit. A huge Madonna fan, he had booked tickets to see a concert in Berlin before his diagnosis. Despite being on a breathing machine, in a wheelchair, we flew to the concert. It was hard, but Jody was going to be brave, so I was going to be brave with him.

Jody died on January 6. He was 38.

After he died, it’s hard for me to say, but I was suicidal. I felt so isolated. I felt everyone’s life had gone back to normal, and I’d been through so much trauma. It left a tsunami in its wake.

After hearing about the Rob Burrow Centre for MND, I decided to climb the biggest mountain in England, Ben Nevis, to raise funds in memory of my son.

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. Going up Ben Nevis was hard and scary, but I know I had to do it, even if I had to crawl.

Jody had such a passion for life. He wanted to live so much. The appeal for the new centre offered a way for me to look forwards, rather than looking back.

Photo credit: Lorne Campbell, Guzelian Media 

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