For Brain Awareness Week 2026 we are raising awareness of the mental health impact of neurological conditions on children and young people.
Throughout the week, we are sharing stories from children and young people on how having a neurological condition, or living with neurological conditions in the family, has affected their mental health. Names have been changed for anonymity.
This is Alex’s story
“Loss is a strange thing. We don’t talk about loss, death, or grief enough. We know it exists, and we support those going through it, but loss is more than death. ‘Loss’ encompasses many things, from a physical sudden loss, to a slow and ongoing loss. For me, I experienced both through my Mum’s MS.
My Mum was diagnosed with MS at 17, she had me at 26. By the time I was starting high school, my Mum’s MS had progressed, meaning her symptoms were gradually worsening with little improvement. Sadly, her MS progressed to a point where she was unable to live alone, and I moved away to live with my Dad. This was the first loss I felt, moving away from my Mum who now lived in a strange (but lovely) place, that was no longer my home, and I couldn’t see her every day.
The next loss I felt was slowly losing more and more of the ‘old Mum’ I had always known. Gradually my Mum stopped being able to communicate verbally, and didn’t always know who I was. However, we adapted and through our connection I began to know what my Mum was trying to say based on her eyes – communication is not always verbal!
The final loss I felt was when my Mum sadly passed away in 2020. Slowly and all too quickly, I had lost pieces of my mum over the course of 8 years. The loss of my mum was neither quick, nor was it simple. It is therefore important to talk about loss, not only to support those going through it, but to acknowledge the varying types of loss that people go through.
For me, I held on to the ‘loss’ I was feeling privately for many years, feeling as though no one would understand. Know that we understand, support you, and it is okay to talk should you wish.”
This is Ben’s story
“My brother is older and I think he has been hit harder by Mum’s death. He remembers life before Huntington’s disease whereas I was only little when Mum went to live in a care home. I can’t really think of a time when she was well.
But I have photos to jog my memories 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. When we visited her in the care home, my dad could always make Mum laugh with a funny story. That really helped when we were all struggling.
Mum had been in a care home for 10 years when we were told her health was getting worse. We knew what was coming and I struggled to cope. My dad contacted Scottish Huntington’s Association and from that day my Specialist Youth Advisor was in touch every couple of days.
Whether it was a five-minute call just to check in, or an hour-long video chat, having someone to speak to makes a huge difference. We would talk about Mum, ways to look after my mental health, how I was coping with stress at school, anything at all that was worrying me. My Specialist Youth Advisor was there for me when Mum passed away, and I still have that support now.”
