Liam Virgo is a young person living with Functional Neurological Disorder (FND), a condition that began when he was 12 and caused a sudden and severe decline in his physical and cognitive abilities. Once active and engaged in school and hobbies, Liam became nonverbal, bedridden, and unable to move. Over the years, with support and persistence, he has made gradual progress in regaining mobility and speech.
Liam now shares his experience in this personal story to raise awareness of FND and highlight the challenges many people face living with the condition.
The sudden onset of FND
Before FND I was happy, enjoyed going to school, loved Doctor Who and enjoyed swimming.
My FND symptoms first started when I was 12. My learning skills deteriorated. In 2016 within a few weeks, my brain and body started to shut down on me, I couldn’t talk, my cognitive skills deteriorated, I used to wet myself, I couldn’t use my hands, I used to chew objects and didn’t know what was happening around me. My mind was just blank.
Then within days I rapidly deteriorated and was unable to walk, I was left suddenly paralysed and unable to talk. I had all my abilities taken away from me. I was then rushed to hospital where I spent four months on a children’s neurological ward.
At first, the doctors were baffled by my mystery illness. They filmed me for medical research for universities around the world. The medical professionals did so many brain scans, blood tests and other medical procedures but everything came back normal. I was very poorly in hospital, I struggled to remember the early days of my FND in hospital but I can remember faces and bright lights.
Life in bed and finding small comforts
Eventually, I was diagnosed with FND (Functional Neurological Disorder). After many months in hospital, I was then discharged. Unfortunately a few weeks after being discharged from hospital my condition deteriorated and I was unable to sit up.
I was offered a special wheelchair but because of my deteriorating posture, it didn’t last long. My body then couldn’t tolerate sitting in any form of equipment apart from my hospital bed.
I was bedridden for three years. The only place I felt comfortable was my bed. I wasn’t well enough to return to school due to my FND. For four years I was supported by Child and Adolescent Mental Health Services (CAMHS). I was also seen by a team from Great Ormond Street. I had so many medical professionals involved in my care.
My body was really stiff and couldn’t tolerate physio or touch. My feet were locked inwards and my hands were clenched. I felt trapped inside my own body. I was unable to move any part of my body. I couldn’t do anything for myself. I was nonverbal for one year until I slowly started to learn how to talk again.
When I was poorly I formed a special bond with two things London and ITV’s Loose Women. It was my dream to visit London and to meet the Loose Women but because of my FND, I wasn’t well enough to go. CAMHS made me London and Loose Women themed progress charts, maps and timelines to help motivate me.
Living with FND and moving forward
Then in 2019, my FND symptoms started to improve. After three years of being bedridden and unable to sit up, I slowly started to move my arms again, and my body didn’t feel so stiff anymore.
Eventually, I slowly learned to sit up again with support and was offered a wheelchair. I then managed to do a few trips out and about, it felt amazing being back in the outside world after three years of being housebound. I achieved my wish of visiting London.
Then in 2020 just as I was getting out and about again Covid struck, and I was stuck indoors again! But that was nothing new to me as I was housebound for years. For four months I was unable to leave the home due to Covid. Later on in 2020 ITV heard about my story and sent me some Loose Women items.
In 2021 after four years of being unable to walk, I slowly learned to stand up again. In 2022 the Loose Women heard about my story and sent me a video message, then a few months later I met some of them. Later that year I slowly learned to walk again with support after five years of being unable to walk. In recent years I’ve been to my favourite place London many times and I’ve met 15 of the Loose Women.
Nine years on from my life-changing illness I’m slowly starting to recover and learning to walk again. I still have difficult days with my illness and have not yet recovered. We aren’t sure if I’ll ever fully recover but I know I can learn to live with my FND.
FND is my new normal even though it feels like I’ve had it forever. Despite my FND, I’ve never given up hope on achieving my dreams.
I want to raise awareness of FND. There have been times during my FND when my symptoms haven’t been understood due to lack of understanding which is why raising awareness of FND is so important.
I hope by sharing my FND story it will help others and hopefully raise awareness. FND took my voice and body away from me but I’m now more determined than ever not to let my FND hold me back from doing anything.
Follow Liam Virgo on Instagram @liamloveslondon.
can you relate to Liam’s experiences of living with a neurological condition or chronic illness? Let us know in the comments box, on social media or contact us to share your personal story.