Brave Auchterarder student Sarah Mitchell is using the loss of her mum to Huntington’s disease to help other young people.
Sarah is speaking out about losing her beloved mum, during lockdown, to help others.
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.
But, sadly, the inspirational 18-year-old has dealt with her mum’s condition from a very early age.
She explains: “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.”
24-hour care
Natalie needed 24-hour care because of the severe physical and mental symptoms associated with Huntington’s disease.
It’s a complex neurological disease caused by a hereditary gene.
As the disease progresses, people develop uncontrolled jerky, fidgety movements and lose ability to walk, talk, eat, drink or swallow.
Other symptoms of Huntington’s disease
Mental health symptoms include:
- depression
- anxiety
- personality changes
- mood swings
- psychosis (in some people).
The disease also damages cognition (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.
‘We began to realise what was coming’
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.”
Unable to visit mum
Coming to terms with it was made even more difficult for Sarah because of pandemic restrictions.
It meant 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 advisors there really well.
“My advisor kept in touch with me every couple of days.
“Whether it was a five minute 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.”
‘I think I’m doing OK’
“My specialist youth advisor 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.”
Conversation