Teenage musical star recounts life in the face of devastating illness

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‘I live every day’: Teenage musical star recounts life in the face of devastating illness

TEEN star William Hillhouse lives knowing he may have inherited the same incurable disease as his father.

But despite the fear of developing the devastating neurological condition of Huntington’s disease, musical theater actor William has vowed to continue singing and dancing his whole life.

The 16-year-old has already appeared on stage with David Hasselhoff and The Krankies – and he knows he’s on the way to becoming even more famous.

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Now he talks about Huntington’s disease and the effect it has on people living with the disease and their families.

Huntington’s disease is caused by a faulty hereditary gene and therefore there is a 50% chance that William inherited it from his father, also William.

William, a pupil at Dance School of Scotland, Knightswood Secondary, said: “We can’t change this, but I can do something positive by raising awareness of the disease as much as possible while continuing my career in musical theatre.

“I’ve traveled across the country and take every opportunity to talk to people about Huntington’s disease and its symptoms.

“I’m a half-full person who hopes for the best because my mother’s positivity inspires me to be the same.”

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William has known about his disease risk since he was young, but has the support of the Scottish Huntington’s Association.

He added: “Since then I have met regularly with one of the charity’s youth advisers and it has made a huge difference to the way I live my life.

“It means I understand the disease much better and there is always someone there to answer my questions and help me understand the changes in my father’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 behaviors, personality changes and, in some people, psychosis.

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Thinking processes are also impaired, causing dementia praecox, affecting the ability to make decisions, plan and organize.

People with the condition are often mistakenly suspected of being drunk or using drugs due to speech and mobility difficulties.

Then, as complex symptoms develop, around-the-clock care may become necessary, which means living in the family home with loved ones is no longer possible.

William’s father tested positive for the faulty gene that causes the disease 19 years ago, shortly after meeting William’s mother, Donna.

Now 43, he has started noticing changes in his movement control and mental health.

Donna, 40, said: “He’s a quieter person than us by nature, but we can see now that he’s becoming more introverted and worried about people staring at him when we’re out and about.

“We are still in the early stages and as a family we are staying positive and supporting each other with the help of an HD specialist from the Scottish Huntington’s Association.

“It is important for us to talk about Huntington’s disease and its impact on our family.

“This is not always the case for other families as there is still a stigma attached to the disease and a general lack of understanding among the general public.”

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As part of his mission to change that, William junior is taking his awareness efforts a step further by performing in George Square on Sunday June 12, as part of the Scottish Huntington’s Association’s Dance 100 event.

The charity is the only one in Scotland dedicated exclusively to supporting individuals and families affected by Huntington’s disease.

It does this through a nationwide network of HD specialists, financial wellness officers and specialist youth counsellors.

William added: “I’m really looking forward to Dance 100, which brings our community together to raise as much money and awareness as possible.

“Families across Scotland, including my own, depend on the vital services provided by the Scottish Huntington Association and I am delighted to have the opportunity to do my part for the charity.

“In the meantime, I live every 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 the services provided by the Scottish Huntington’s Association, visit hdscotland.org

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