TEEN star William Hillhouse lives with the knowledge he may have inherited the same incurable disease as his dad.
But despite the fear of developing the devastating neurological condition Huntington’s disease, musical theatre actor William has vowed to keep singing and dancing through life.
The 16-year-old has already appeared on stage with David Hasselhoff and The Krankies – and he knows he’s on course for even greater stardom.
Now he is speaking out about Huntington’s and the effect it has on people living with the illness and their families.
Huntington’s disease is caused by a hereditary faulty gene and so there is a 50% chance William has inherited it from his dad, also William.
William, a pupil at the Dance School of Scotland in Knightswood Secondary, said: “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.”
William has known about his risk of the illness since he was young but has support from Scottish Huntington’s Association.
He added: “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, 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 tested positive for the faulty gene that causes the disease 19 years ago, soon after he met William’s mum Donna.
Now 43, he has started to notice changes in his movement control and his mental health.
Donna, 40, 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 on Sunday, June 12, as part of the Scottish Huntington’s Association Dance 100 event.
The 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.
William added: “I’m really looking forward to Dance 100, which is bringing our community together to raise as much money and awareness as possible.
“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, see hdscotland.org