Nepal trek to raise awareness of an unwanted inheritance

Marie is making sure she is well prepared for Nepal
Marie is making sure she is well prepared for Nepal
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The Nepalese mountains await her but Brightons mum Marie Short has already had an uphill struggle with a particularly cruel disease.

Not only was the degenerative neurological condition Huntington’s Disease (HD) responsible for the premature death of her father, it has also claimed the life of her older brother.

Her sisters, who also have the condition, are both in care homes as they move into the final stages associated with the hereditary disease.

Marie (45), from Brightons, is herself HD positive, something she discovered from a genetic test as a teenager rather than from the presence of symptoms.

“I am pre-symptomatic,” she said.

“I have no motor or neurological symptoms.

“I worked full-time as a scientist in the pharmaceutical industry up until five years ago, when I had to stop.

“I was dealing with mental health problems, my mum was struggling and my own children were very young – I just lost my footing.

“I may never know if that was the start of symptoms or just because of what was going on with life.

“But I am better now, much better than I was.

“I just focus on each day, and I have found a balance again.”

Originally from Glenrothes, Marie’s family has had to endure the ripple effect of the condition.

Her father was 54 when he died, and Marie and her siblings have all inherited the condition.

Her brother Hunter Young died three years ago when he was 50 and her sisters, Kathleen Celentano (54) and Janet McIlwaine (51), now require 24-hour care.

The cruel disease tends to affect the children at the same stage of life at which it did their parent.

“It’s very difficult,” said Marie, “you have to take it one day at a time.”

But one thing that has given Marie focus and motivation has been her ongoing support from the Scottish Huntington’s Association (SHA), the only charity in Scotland that supports people affected by the disease.

She has served as a board member for the past seven years and has also been involved in several fundraising initiatives.

Marie has already walked the West Highland Way and taken part in various other fundraisers over the past few years.

But next month, she will take on her biggest challenge yet.

Leaving on November 13, Marie and two friends will travel to Kathmandu in Nepal and then head to the rugged Annapurna Himalaya range.

“It’s a huge distance away from the capital,” said Marie, “and we basically head into the foothills of the bigger mountains.

“We then trek for eight days, for around six hours a day, staying in tea houses in the evening.”

The undulating trek will snake around Poon Hill which, at its highest, is 3210 metres tall. Marie’s companions for the feat will be her former colleague Sharon Kinning and her friend from SHA Linda Winters.

Marie said: “Sharon and I had intended to run a marathon and we had been training but her partner died very young and we never got round to it.

“That was a few years ago and I still wanted to do a physical challenge, to give her a focus like I had.

“So Sharon is raising money for both SHA and Macmillan Cancer Research.

“I had been telling Linda about the Nepal trek and she said it sounded good so I invited her to come.”

So far Marie has been training with regular long walks and hikes. She also spent her summer holiday in the Pyrenees.

“I was nervous about Nepal initially but the fundraising has gone so well,” she said.

“I’ve spent this year raising funds through different avenues.

“People have been so supportive; I just had to open my mouth and I had support.”

Through various fundraisers, including an abseil down the Falkirk Wheel last month, Marie has raised £5060.

Her last fundraiser, pre-Nepal, will be taking part in the 5K run around the Kelpies at night next month with her 12-year-old daughter Amy.

Marie, who also has a son Arran (14), added: “Raising awareness is the key and making it easy for people to talk about it is really important.”

To donate to Marie’s fundraising, visit www.justgiving.com and search Marie Short.