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Sarah pays tribute to her late Mum as she joins SHA Youth Ambassador team

Sarah Mitchell, from Perthshire, has joined our team of Youth Ambassadors to help other young people and raise awareness about how Huntington’s disease impacts families.

The 18-year-old is taking on the volunteer role after losing her much-loved mum Natalie to the disease 18 months ago. Coming to terms with her loss was made even more difficult for Sarah because pandemic restrictions meant that for some time she hadn’t been able to visit the care home where Natalie lived.

“For a long time, my dad was the only person who visited Mum, then we got a call to say that her health was getting worse. By then she had been looked after in care homes for 10 years and the pandemic lockdown was in place. Over the next couple of months, Mum’s health wasn’t improving and we knew what was coming.

“During that time, my Dad got in touch with the Youth Service to tell them what was happening. Because I’ve moved around a fair bit since I was little I’ve probably been supported by every Specialist Youth Advisor at Scottish Huntington’s Association so I know them really well.

“Mum’s health was getting worse and I was struggling to cope. My Specialist Youth 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.

“My Specialist Youth Advisor was there for me when Mum died too, helping me to cope and understand. My brother James is 12 years older than me and in a way he has been hit much harder by Mum’s death. He remembers what life was like before the Huntington’s disease symptoms started. 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 memories and I know that, from what everyone tells me, she was great fun and had lots of friends. She was very funny and would laugh a lot. When we would visit her in the care home, my dad could always make her laugh with a funny story, which really helped when we were all struggling.

“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 the Youth Service and I’ve had great encouragement to volunteer as a Youth Ambassador.

“I’m ready to share my experiences with other young people growing up in HD families, I want to help them to feel less isolated because I understand what they’re going through. It’s also an opportunity to give back to the charity – and if I’m able to help somebody even just a little bit that will be really good.”

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