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
“My mum was diagnosed with MS long before I was born. For me, growing up, MS was normal; it was just what my Mum had.
I could tell you all about MS – and I often did! As a child, I stood up for my Mum when people didn’t understand why she was using a wheelchair, had questions (as children do), or perhaps when she was making noise while trying to get her sweets out of the bag in the cinema because her hands were shaking. I felt very strongly about looking out for my Mum.
I could also tell you more advanced things, like whether my mum had drunk enough based on her catheter bag, or whether she was having a relapse and what that was. But, was I a young carer? No.
Looking back now, knowing what a young carer is, of course I was. But to me, when I was a child looking out for my Mum, I wasn’t. To me, I was just looking after my Mum and that was fine. I think, looking back, the label wasn’t important. What was important was support. I knew so much about my Mum, and was also one of the people looking out for her, but in my own way. However, my ‘expertise’ wasn’t always acknowledged by some family, or even health professionals.
My advice to family and professionals then, is: Think about the ‘mini-experts’ in someone’s life. Check in with them, ask them what they think – include them. Children pick up on so much without you knowing, make sure they know they are valued, beyond just labelling them as ‘young carers’.
For young people going through a similar experience: We see you. You are doing so well, and are so important to your families’ lives, keep fighting for what you see, know, and feel, and know your voice is important too.”
This is Sarah’s story
“Mum was an extraordinary role model for me as a very young girl. She was a beautiful dancer with an amazing vibration about life. But over time she became moody and unpredictable, and her movements and behaviour changed. Sometimes people thought she was drunk.
As a child of someone with Huntington’s disease, I now realise how isolated I was. I was caring for my mum but not coping with what was going on. As a family, we never really discussed what was happening at home and I never told anyone. Even if I knew who to tell, I didn’t have the words to explain.
We didn’t know what was wrong, or even that she was ill at that stage. I just knew my mum was different and our relationship became very difficult when I was a teenager.
Fortunately, young people from Huntington’s families now have the specialist support that I needed back then. We now see a generation of children and young people with the confidence, knowledge and vocabulary to talk about what it means to have such a devastating disease in their family, and how it impacts their home, school, work and social lives.”
For more information on mental health and condition specific support services, visit:
