Mei’s Story | FND Awareness Day UK 2026

A personal story of caring for a child with Functional Neurological Disorder (FND).
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I am the parent of an 11 year old boy living with FND.

Our journey began two and a half years ago after he blacked out and fell at school and split his head open. I never imagined that moment would be the start of such a long and painful road. Since then, I have been fighting, not just for my son’s health, but to be heard.

Every day I advocate for him, especially in school, where understanding has been so limited. Instead of support, I’ve been met with judgment. I’ve been called an “anxious mother” and accused of enabling my child, as if loving him and listening to him is something wrong. We reached out for help through CAMHS. He was seen then discharged. I fought for him to be seen again,only for it to end the same way, this time with something a simple as “leaves on a river” meditation. It felt like his struggles were being dismissed, like his pain wasn’t real.

I’ve been told I listen too much to my son. But he is 11. He is scared, he is trying to understand what’s happening to his own body. If I don’t listen to him, who will?

No one seems to be listening to us and that’s the hardest part. It shouldn’t be this hard to get help for your child. Ur shouldn’t feel like you have to fight every step of the way, all we need is compassion but instead we are met with judgment.

~ By Mei, Age 40