An inspirational teenager has vowed to sing and dance his way through life despite being at risk of developing the same incurable disease as his dad.
William Hillhouse, from East Kilbride, was told there is 50% chance that he has inherited Huntington's Disease that could see him lose the ability to walk, talk and eat.
The 16-year-old student of the Dance School of Scotland is hoping to raise awareness of the disease while pursuing his career in musical theatre.
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So far, William has has appeared in pantos with David ‘The Hoff’ Hasselhoff and his heroes The Krankies and has even fulfilled a childhood ambition by joining The Krankies on stage to belt out the fabled Fandabidozi song.
He explained: "“Huntington’s disease is caused by a hereditary faulty gene and there’s a 50% chance that I’ve inherited it from my dad.
“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.”
Huntington’s disease 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, and affecting the ability to make decisions, plan and organise.
William’s dad – also called William – tested positive for the faulty gene that causes the disease 19 years ago, soon after he met Donna, his wife. Now 43, he has started to notice changes in his movement control and his mental health.
She said: “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.
“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 amongst the wider public.”
As part of his mission to change that, William junior is taking his awareness raising efforts one step further by performing in George Square, Glasgow, on Sunday, 12 June as part of the Scottish Huntington’s Association Dance 100 event.
To find out more about Dance 100 and services provided by Scottish Huntington’s Association, visit hdscotland.org
