Nix’s Story | FND Awareness Day UK 2026

I had a seizure a year ago and this changed everything for me. That one seizure progressed into daily seizures, paralysis, dystonia, tics, pain, fatigue, and SALT difficulties. I now use a wheelchair and crutches, and I rely on carers every day.

I struggled to get any answers. My condition was rapidly worsening while I was repeatedly told to go to A&E each time, yet always discharged with no help. Eventually after saving my PIP for months, I saw a neurologist privately who fast tracked me to where I am now – on the waiting list for my local FND clinic. I am incredibly privileged to have been able to do this.

I’m only 19, I have my whole life ahead of me. I should be working towards my goals, taking on opportunities, like others my age. Instead, everything is paused because FND has taken it all from me.

But it has also taught me to appreciate the small moments: when my friends include me while I’m in my wheelchair, when I can walk through a park unaided, when I can manage a whole day out to the beach with my carers, when I have the energy to cook my favourite pasta dish from scratch, when a seizure is short.

FND may have chosen me, but I choose gratitude. And I choose to raise awareness so that others with FND can feel understood and supported.