Teenage musical theatre sensation William Hillhouse has vowed to sing and dance his way through life – despite being at risk of developing the same incurable disease as his dad.
The super talented 16-year-old has appeared in pantos with David ‘The Hoff’ Hasselhoff and his heroes, The Krankies.
He’s even fulfilled a childhood ambition by joining The Krankies on stage to belt out the fabled Fandabidozi song.
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Now, William is speaking out about the devastating neurological condition Huntington’s disease and its impact on individuals and families.
And he's doing all he can to raise awareness and funds for the Paisley-based charity that supports families affected by the incurable condition.
“Huntington’s disease is caused by a hereditary faulty gene and there’s a 50 per cent chance that I’ve inherited it from my dad,” said actor William, a student at the Dance School of Scotland in Glasgow.
“We can’t change that but I can do something positive by raising as much awareness about the disease as possible while pursuing my career in musical theatre.
“I’ve travelled all over the country and I take every chance to speak to people about Huntington’s disease and its symptoms. I’m a glass-half-full person who hopes for the best because my mum’s positivity inspires me to be the same.
“I’ve known about the risk to me since I was young. Mum got in touch with Scottish Huntington’s Association to make sure I have the right support. I’ve been meeting up regularly with one of the charity’s youth advisors ever since and it’s made a huge difference to how I live my life.
“It means I understand much more about the disease and there’s always someone to answer my questions and help me to understand the changes in my dad’s health.”
The symptoms of Huntington’s disease typically begin to develop between the ages of 30 and 50. It is hereditary, meaning that it impacts upon entire families over generations, rather than on individuals alone.
Each child of a person who has Huntington’s disease is at 50 per cent risk of inheriting the disease, which causes severe physical, mental and cognitive symptoms.
As they progress, uncontrolled jerky movements develop and the ability to walk, talk, eat, drink and swallow is lost. Mental health deteriorates, leading to depression, anxiety, mood swings, challenging behaviours, personality changes and, in some people, psychosis. Thinking processes are also impaired, causing early onset dementia, affecting the ability to make decisions, plan and organise.
People with the condition are often wrongly suspected of being drunk or on drugs because of difficulties with speech and mobility. Then, as complex symptoms develop, 24-hour care can become necessary, meaning it’s no longer possible to live in the family home with loved ones.
William’s dad – also named William – tested positive for the faulty gene that causes the disease 19 years ago, soon after he met his wife, Donna.
Now aged 43, he has started to notice changes in his movement control and his mental health.
“He’s a quieter person than the rest of us by nature but we can see now that he’s becoming more introverted and worried about people looking at him when we’re out and about,” said Donna, 40.
“We’re still in the early stages and as a family we’re staying positive and supporting one another with the help of an HD specialist from Scottish Huntington’s Association.
“It’s important for us to talk about Huntington’s disease and its impact on our family. That’s not always the case for other families because there’s still a stigma attached to the disease and a widespread lack of understanding among the wider public.”
As part of his mission to change that, William junior, of East Kilbride, is taking his awareness-raising efforts one step further by performing in George Square, Glasgow, on Sunday, June 12, as part of the Scottish Huntington’s Association Dance 100 event.
The Paisley-based charity is the only one in Scotland dedicated exclusively to supporting individuals and families impacted by Huntington’s disease.
It does this through a nationwide network of HD specialists, financial wellbeing officers and specialist youth advisors. Scottish Huntington’s Association is also actively driving up awareness about the disease and campaigning for improved services for all families, regardless of where in Scotland they live.
“I’m really looking forward to Dance 100, which is bringing our community together to raise as much money and awareness as possible,” said William.
“Families all over Scotland, including mine, depend on the lifeline services provided by Scottish Huntington’s Association and I’m delighted to have the opportunity to do my bit for the charity.
“In the meantime, I’m living each day. I choose not to dwell on what might or might not happen – and to sing and dance instead.”
To find out more about Dance 100 and services provided by Scottish Huntington’s Association, visit hdscotland.org
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