The Sudden Onset
In 2016 within a few days I lost my ability to walk and talk. I transitioned from a healthy 13 year old to one who couldn’t move or even speak. After months in hospital I was eventually diagnosed with severe Functional Neurological Disorder (FND) and Dystonia. I was suddenly and severely disabled, having all my abilities taken away from me. I left the hospital in a wheelchair and with some other equipment. But not even the doctors really knew what caused it. I had at least 20 different professionals from across all different services involved in my care. My brain and body completely shut down on me and I didn’t know who or what anything was. For six months my mind switched off as I don’t remember the early days of my illness and life before it is a blur. I couldn’t do anything for myself and my parents were my full time carers as I needed 24 hour care.
Liam Virgo
Managing the Pain
My body was continuing to deteriorate and then I lost the ability to sit up. Different wheelchairs were given but nothing was suitable. I became bed bound as the only place I felt comfortable was on my hospital bed. I was bedridden for years and felt trapped inside my own body. The physical reality of severe dystonic symptoms while bed bound was painful and very isolating. I’ve missed years of schooling because of Dystonia as I wasn’t well enough to return to education. While I was poorly 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. A team at Great Ormond Street Hospital created a London themed progress chart to help motivate me to achieve my wish.
The Path to Recovery
After five years of paralysis I’m now learning to walk again. I can stand unaided and I’m able to talk. When I was well enough I made it to London and have been back many times since to my favourite place. My next wish is to visit Cyprus as I am of Cypriot descent and it’s where my favourite food (Keftedes) comes from.
Advocacy
I’ve had a very long journey with my Dystonia but I’m now determined to raise awareness about the illness that changed my life. I’m using my voice, the voice that I once lost to raise awareness. I had all my abilities taken away from me at 13 but one thing my condition could never take from me is my determination. I’ve been determined to not let my disability hold me back. Doctors aren’t sure if I’ll ever fully recover but I now know that I can learn to live with my symptoms. I still have difficult days but I know if I can get through all of that I can get through anything.
I’m also on instagram where you can follow my adventures and lots more https://www.instagram.com/liamloveslondon
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Liam Virgo, United Kingdom
