Student shares loss of mum to Huntington’s

Brave Auchterarder student Sarah Mitchell is using her experience of losing her mum to Huntington’s disease to help other young people.

Sarah is speaking out after her beloved mother died during lockdown.

She hopes to increase understanding about the condition and the impact it has on families.

Sarah’s mum Natalie passed away 18 months ago, aged just 55.

The inspirational 18-year-old has dealt with her mum’s condition from a very early age.

She said: “I was only seven when Mum went to live in a care home so I can’t really remember a time when she was well.

“I have photos to jog my memory and I know that, from what everyone tells me, Mum was great fun and had lots of friends. She was very funny and would laugh a lot. Even when she was really ill, my dad could always make her laugh with some funny story.”

Natalie needed 24-hour care because of the severe physical and mental symptoms associated with Huntington’s disease.

It is a complex neurological disease caused by a hereditary gene.

As the disease progresses, those with the condition develop uncontrolled jerky, fidgety movements and lose the ability to walk, talk, eat, drink or swallow.

It may also cause depression, anxiety, personality changes, mood swings and in some people, psychosis.

The disease also damages cognition – our thinking processes – leading to dementia and an inability to make decisions or plan. Each child of someone with Huntington’s disease has a 50/50 risk of also having inherited the faulty gene that causes the incurable condition.

A test is available for those aged 18 or over who choose to have it.

During lockdown, Sarah got a call she didn’t want to receive.

“Mum had been looked after in care homes for 10 years when we received a call during lockdown to say her health was getting worse.

“Over the next couple of months, Mum’s condition didn’t improve and we began to realise what was coming.”

Dealing with it was made even more difficult for Sarah because of pandemic restrictions. For a long time she hadn’t been able to visit her mum.

“I was struggling to cope because I couldn’t see her. So my Dad got in touch with the Scottish Huntington’s Association to tell them what was happening.

“I’ve been supported by the charity’s Youth Service for a long time and I know the specialist youth advisers there really well.

“My adviser kept in touch with me every couple of days. Whether it was a fiveminute phone call just to check in or an hour-long video chat, it made a huge difference having someone to speak to.

“We would talk about Mum, ways to look after my mental wellbeing, how I was getting on at school, anything that was worrying me.

“My specialist youth adviser was also there for me when Mum died, helping me to cope and understand. Now that some time has passed, I think I’m doing OK. I’m working part-time, studying at college and looking forward to my second year on the professional cookery course.

“The support is still there from Scottish Huntington’s Association and I’ve had great encouragement from them to volunteer as a youth ambassador.

“I’m ready to share my experiences with other young people growing up in Huntington’s disease families; I want them to know that I understand what they’re going through.

“I’m also going along to the charity’s Dance 100 event in Glasgow next month to help raise funds and awareness.

“It’s an opportunity to give back – and if I’m able to help somebody at the same time, even just a little bit, that will be really good.”

BRAVE: Sarah Mitchell, 18, is helping raise awareness of Huntington’s disease after the death of her mum who had the condition for many years.