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 Bruce’s story
“Bruce was a bright, confident six-year-old who loved school, football, and family life. Two weeks after a respiratory illness swept through the household, he woke up a completely different child.
Overnight, Bruce developed severe contamination fears and obsessive rituals. He refused to touch everyday objects, demanded multiple baths and showers, and followed rigid bathing routines. He had tics, his legs were stiff and he walked with a limp, and his hand and wrists locked into uncomfortable positions. He also suffered with separation anxiety.
While these are physical symptoms of what was later understood to be PANDAS, they also led to mental health challenges, with Bruce banging his head off walls, saying that he couldn’t cope, and at his lowest moments said over and over that he wanted to die. He was 6.
Local NHS services referred Bruce to CAMHS, however with CAMHS suspecting a medical cause, there wasn’t pathway for Bruce to be referred onto. Bruce’s parents took him to see a private doctor. The doctor diagnosed PANDAS and prescribed a short course of antibiotics. By day 10, all of Bruce’s symptoms had gone.
With exposure to another trigger however (this time it was the flu), Bruce’s symptoms re-appeared, and this time he also developed severe eating restrictions. Foods he had always enjoyed became impossible to face, he thought he was choking and was going to die. He stopped eating, and his weight dropped dramatically. Doctors warned that if he didn’t start eating, they would need to intervene. Bruce’s parents returned to the private doctor, who again prescribed antibiotics, and again Bruce recovered.
Bruce’s symptoms continue to fluctuate, most notably when he is fighting an infection, and he continues to find dealing with his symptoms incredibly challenging, some days he can manage in school no problem, on others he just can’t cope with the environment and becomes completely overwhelmed. Bruce and his parents are fearful of what the next infection might bring, not only in terms of symptoms, but also in the battle they will face for medical care, as well as health, education and social care support.”
This is Nikolas’ story
“Nikolas is a young boy with a rare neurological condition whose journey has been transformed by being truly listened to.
Previously, his world was limited by a lack of understanding and appropriate support. He showed no clear startle response to sensory stimuli and was highly agitated which caused him to overheat and sweat. These behaviours were believed to be a fear response triggered by isolation and having no robust communication strategies in place. He experienced high muscle tone, particularly during movement and personal care, requiring three adults for safety during transitions.
With no consistent communication strategy in place, his cognitive ability and emotional wellbeing could not be assessed, leaving him isolated and largely disengaged from his environment. His parents described him as being ‘depressed’ and rarely smiled or appeared happy. Most of his day was spent positioned in his Acheeva bed, often with his neck extended backwards to maintain his airway, and he was unable to access learning experiences, play and fun. His interactions with others were minimal, and his feelings, preferences, and needs went unheard.
Now, by contrast, Nikolas is an active, expressive learner with “a lot to say.” A consistent communication strategy is embedded, using a high-contrast 12-cell-per-page PODD, alongside a refined affirm and reject response that allows him to make clear choices. He spends most of his day sitting upright in a supportive seat, giving him a secure base, improved head control, and greater functional movement. He initiates conversations, contributes to learning, and demonstrates understanding through alternative pencils, letter recognition, and self-correction. Switch access has enabled him to control music, games, and eventually the drive deck, giving him choice, independence, and opportunities to play, cook, and explore with peers and family.
He now engages meaningfully with the world around him, seeks out relationships, expresses how he feels, and has his wants, wishes, and needs heard and respected. His parents have commented that his emotional wellbeing has significantly improved and his personality and character is shining through. Being heard has brought him safety, confidence, curiosity, and age-appropriate access to learning, play, and joy.”
This is Jaz’s story
“I was eight or nine when I found out Dad was ill with Huntington’s disease and he passed away when I was 12. I wanted to be tested as soon as possible and was 18 when I found out that I’ve inherited the faulty gene that causes the disease. I gave up on things after that, withdrew from the world, and didn’t have the motivation to get through college, or for anything else really.
I didn’t want to engage with any services or support for quite a long time before Scottish Huntington’s Association invited me to volunteer at its youth summer camp. It wasn’t typical of me to do something like that especially as I feel awkward in social situations, but I’ve been back year after year. It’s a great environment for meeting other young people from Huntington’s families, supporting one another, learning about the disease and finding out about the help that’s available.
It really inspired me and I realised that I could be doing a lot more. I’ve regained a bit of the confidence that I’d lost during those darker years and have even fundraised for Scottish Huntington’s Association to give back.
“I didn’t tell my friends about my test result until after that first summer camp. They made me wonder why I’d tried so hard to keep it secret for all those years. Although we don’t talk about it much, it’s not an awkward subject. I know they and Scottish Huntington’s Association are there for me when I need them.”
