My name is Liam Virgo and for 10 years I’ve been fighting Functional Neurological Disorder also known as FND. I’ve been battling the illness since childhood and I’m now pushing to raise awareness about the disorder that changed my life. This is my story which I’m pleased to be sharing with The SEN Expert.

In early 2016, I was a healthy 13-year-old. I was active, social, and had my whole life ahead of me. Then, without warning, the "software" in my brain crashed. I didn’t know it then, but I was beginning a decade-long battle with Functional Neurological Disorder (FND).

It started with a complete bodily shutdown. My body was deteriorating rapidly. While at school I had to be held up by two members of staff as I could barely walk. I had to leave school as it wasn’t safe for me. Things then took a turn for the worse and I could no longer walk or talk. I lost control over my own body at 13. I was then rushed to hospital for testing where I then came out four months later with a diagnosis of severe Functional Neurological Disorder. I don’t remember the early days of my illness and life before it is a blur. For six months my mind went blank and I didn’t know who or what anything was. My brain and body completely shut down on me. I became suddenly and severely disabled, having all my abilities taken away from me. I left the hospital with some basic equipment and had at least 20 different professionals involved from across all different services. I had an EHCP and was also supported by CAMHS. FND struck again when it caused me to lose the ability to sit up. I was given a specialist wheelchair however due to my deteriorating posture this didn’t last long. For a few months I attended a special school however this wasn’t suitable for me as they had never come across someone who had FND before. In the end I had to leave as it wasn’t safe for me because of my deteriorating posture and I couldn’t cope throughout the day. The school environment with FND wasn’t suitable for me.

It got to the stage where my body couldn’t tolerate any form of equipment apart from my hospital bed. Whenever I was transferred to equipment my head would be on my knees as I would collapse forwards. I couldn’t tolerate touch, straps or physio. Wheelchair services said no wheelchair was suitable for my needs. I became bed bound. The only place my body felt comfortable was on my bed. For the next three years, I was bedridden. For five years, I couldn’t walk. Doctors explained that while my "hardware"—my brain and nerves—looked fine on scans, the signals weren't getting through. My brain had forgotten how to talk to my body.

When you lose your voice and your mobility at a young age, the world starts to feel like it’s moving on without you. I felt invisible. I felt trapped inside my own body.

But with the right support, hope and determination my life began to change for the better. After a year of being unable to talk my words slowly came back. While I was bedridden I found comfort in a few things and one of them was London. It was my dream to visit the capital but because of my FND I wasn’t well enough to go. I was seen by a specialist team from Great Ormond Street Children’s Hospital and they came up with the idea of a London progress chart. It helped to motivate me to achieve my wish. If I moved an arm or a finger I would get a point so that would mean I am one step closer to achieve my dream. Eventually after three years my physical health started to improve. When my body could tolerate sitting again I was given a wheelchair then was off to London! It felt amazing to be back in the outside world again after being housebound. I’ve been back many times since to my favourite place. And I’ve also achieved other wishes and goals such as meeting the cast of the ITV show Loose Women and visiting over 100 towns and cities across the uk.

Today, I am in FND recovery. I am learning to walk again and reclaim the independence that FND took from me. I still have difficult days but I’m now adjusting to life post severe FND and learning to live with my new normal.

My next wish is to visit Cyprus as I have Cypriot descent and it’s where my favourite food comes from.

I share my journey on my Instagram, @liamloveslondon, to show other young people that a diagnosis isn't the end of the book; it's just a very difficult chapter. I lost my teens to this disorder, but I refuse to lose my future. My legs might still be heavy and the emotional scars are still felt to this day but my spirit is louder than it’s ever been. I went from a bedridden boy who couldn't whisper to a young man who won't stop talking until the world understands what FND is.