A big-hearted Edinburgh mum-of-four is opening up her ghostly garden on the spookiest night of the year to raise funds for the charity that supports people like her gran who’ve been affected by devastating and incurable Huntington’s disease.
Kim Herkes and her family – husband Colin and sons Aaron, 17, Jayden,14, five-year-old Logan and Jaxon, aged two – go all out to celebrate Hallowe’en every year by transforming their back garden into a haunted horror fest with zombies, vampires, skulls, pumpkins and scary skeletons lurking in the shadows.
The busy mum spends months creating models out of everyday bits and pieces found around the house, papier mâché and modelling clay.
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Then, after she has brought the creepy characters to “life,” Colin and the boys get stuck in to displaying them outside.
It’s become a real Hallowe’en highlight in their community. Last year, hordes of little horrors, witches, ghosts, monsters and ghouls – with their parents in tow – showed up to explore the fiend-filled forest at the family’s back door.
“It started out as a bit of fun for local children, but last year it was so much bigger,” explained Kim, 35.
“We had more than 100 people and some came back for a second visit with friends. Colin ended up having to dash round to the shops because we ran out of sweets.
“Lots of visitors assumed it was for charity and were shocked that we weren’t taking donations.
“They convinced me it was a good fundraising opportunity and I decided that this year we’d support Scottish Huntington’s Association and families affected by Huntington’s disease.”
Huntington’s disease affects the brain and causes severe physical, mental and cognitive symptoms, including uncontrolled, jerky movements and the loss of ability to walk, talk and swallow.
Thinking processes can change, resulting in early onset dementia and loss of ability to plan and organise. Serious mental illness such as mood swings, depression, anxiety, and, in some people, psychosis, may also develop.
As symptoms progress, 24-hour care can become necessary, meaning it is not possible to live at home. To compound the devastating toll on families still further, each child of a person with Huntington’s is at 50/50 risk of inheriting the disease.
Scottish Huntington’s Association is the only charity in the country dedicated exclusively to providing the tailored support families need. It does this through a nationwide network of Huntington’s Disease specialists, financial wellbeing officers and specialist youth advisors.
“My grandmother has Huntington’s disease and, looking back, we think her mother – my great grandmother – had it too,” explained Kim, of Groathill, Edinburgh.
“We first began to notice changes when gran’s behaviour started to change. She would become very angry, very quickly and could be quite aggressive. She thought there was nothing wrong, but her arms were jerking and her speech was becoming affected. Now, it’s becoming more difficult for her to talk and her memory is deteriorating.
“We’d never heard of Huntington’s disease before gran’s diagnosis about 10 years ago and had no idea that it could be passed down through the generations.
“Our wider family is affected but fortunately my mum tested negative, which means I’m not at risk and neither are our boys.
“It must be terrifying to have the disease and to know that you’re losing yourself, and it’s awful to watch that happening to someone you love.”
Kim added: “Scottish Huntington’s Association does great work to make sure specialist support and the right care is there for families. I’m pleased to do my bit and hopefully we’ll raise much-needed funds and awareness, all while having a bit of frightening fun with our friends and neighbours.”
The Herke family Hallowe’en howler won’t be the first time Scottish Huntington’s Association has benefited from the gory sight of fake blood and severed artificial limbs.
A mum of three from Lanark embarked on one of her biggest fundraising challenges for the charity when she enlisted help from the unlikely source of the cast of TV drama Casualty.
Gillian McNab, 52, who works as a palliative care nurse at Strathcarron Hospice in Falkirk, took part in Dance 100 – a dance-athon event created in collaboration with the charity and held last June in George Square, Glasgow.
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She reached out for help to Casualty actor George Rainsford, who plays Dr Ethan Hardy – a consultant facing the onset of Huntington’s disease in the long-running BBC series.
Gillian and George first met during a Zoom call last year organised by Huntington’s disease charities. Their online chat so inspired George that he invited Gillian to visit the Casualty set last summer, meet the cast – and take part in filming as an extra. For Gillian, a Casualty super-fan, it was a dream come true.
“I started nursing around the time Casualty began and I’ve always watched it,” said Gillian, who has the faulty gene that causes Huntington’s disease.
“Visiting the Casualty set was one of the best experiences of my life. George came in on his day off and introduced me to the cast, showed me round then stayed to watch the scenes being filmed with me as an extra. It was amazing.
“His character’s storyline raised so much awareness about Huntington’s disease and the impact that it has on individuals and families, and George does even more outside of filming to raise awareness since becoming patron of Huntington’s Disease Association England and Wales too.
“When it came round to organising Dance 100, I got in touch to see if George could help promote the event – and he sent back an amazing video of the cast dancing to the Casualty theme tune. Since then, he spoke about Dance 100 on BBC1 Morning Live – I didn’t know he was talking about me and showing my photo in Casualty scrubs until my friends all started texting to say I was on the telly. I was blown away.”
Gillian has become one of the leading voices in Scotland’s Huntington’s disease community, raising awareness about the disease by giving talks to community groups, health professionals and social care practitioners, volunteering as a trustee on the charity’s board, and raising funds in excess of £20,000.
