with Liam Virgo, disabled young person with Functional Neurological Disorder
SEN and disability can affect anyone at any time. It’s always interesting to wonder if those who decry properly supporting disabled children and young people, suddenly found themselves caring for a child or relative with a disability, or if they themselves became disabled, how their attitude would change.
Liam Virgo is a young man who was growing typically, and enjoying school. Suddenly, aged 13, he was struck by Functional Neurological Disorder (FND). FND, also known as ‘brain network disorder’, affects how the brain and nervous system work. It leads to a range of neurological symptoms such as limb weakness, paralysis, seizures, walking difficulties, spasms, sensory issues, cognitive problems and more. Symptoms can range from mild to disabling and life-changing.
Liam was lucky to get the support he needed, but still experienced some distressing treatment. But his therapy shows why some seemingly “non-educational” activities are vital to support progress.
Thank you to Liam for getting in touch to tell us his story…
Liam’s life with Functional Neurological Disorder
My name is Liam and for nearly ten years I’ve been fighting Functional Neurological Disorder. Before FND I was happy and healthy. In 2016 when I was 13 years old, I started to experience severe FND symptoms. My cognitive skills deteriorated, I needed support to walk, I became incontinent and didn’t know what was happening around me. I had to leave the school I was at as it wasn’t safe for me due to my deteriorating condition.
Things then took a turn for the worse and within a few days, I suddenly became paralysed and lost my ability to talk. I was then rushed to hospital for testing, where stayed for four months on a specialist children’s neurological ward. While in the hospital I had many visitors and get well soon cards.
No one knew what was wrong
At first, the doctors were baffled by my mystery illness. My case was filmed for medical research for universities around the world. I struggle to remember my time in hospital; the early days of my condition and life before it is a blur. My FND stopped me from knowing. At times, my illness was mislabelled as other conditions such as autism, psychosis, and they even thought I could have motor neurone Ddisease. They described my condition as an “unknown disorder”.
I had so many scans, tests, and medical procedures but everything came back normal. Eventually, after months of unanswered questions I was diagnosed with Functional Neurological Disorder. A few weeks after my diagnosis, I was discharged as there was no cure and nothing more could be done.
Equipment and support arrives
Once I left the hospital, I was given many types of equipment including a hospital bed, wheelchair, toilet chair, hand splints, hoist, posture chair and more. I had at least 20 different professionals involved in my care.
I was given an EHCP and was also supported by my local council. Child and adolescent mental health services (CAMHS) were involved too. A few weeks after being discharged from hospital, my body started to deteriorate again and within a few weeks, I lost my ability to sit up. I was then given a specialist wheelchair but due to my deteriorating posture this didn’t last long.
However, my brain function slightly improved and I could finally understand what was happening. For a few months, I attended a special school but this wasn’t suitable, as they’d never come across someone like me before who had FND. My body continued to deteriorate while at the school and I had to be in a lying-down position all the time. They didn’t know how to support me or look after me and at times, I would hear whispering saying “attention-seeking”, “he’s pretending”, and “it’s all in his head”.
That language is completely unacceptable and unforgivable and must never be said to someone who has FND. At the time, I still couldn’t talk so was unable to speak up, but I would never tolerate anything like that being said now. In the end, I had to leave as it wasn’t safe for me and I couldn’t cope throughout the day.
My body continued to deteriorate and I was also diagnosed with catatonia and dystonia. It got to the stage where my body couldn’t tolerate being in any other type of equipment apart from my hospital bed, where I could be comfortable. I was bed bound.
Trapped in my body for years but determined to improve
I was bedridden for three years. I felt trapped inside my own body. It was like being awake inside a body that had stopped working. For years I saw no way out from being locked inside my mind and body. I couldn’t do anything for myself. I was very poorly and needed 24-hour care.
For a year, I was nonverbal, but then slowly, with support, hope, and determination, my life began to change. I slowly started to learn how to talk again with support from speech and language therapy. At first just a few words then eventually after a year of being unable to talk my voice fully returned.
By this time my brain functioning had improved and I could fully understand what was happening around me. Due to my severe FND I was seen by a specialist team from Great Ormond Street Children’s Hospital.
When I was poorly I formed a special bond with two things and they were London and the ITV show Loose Women. I saw London on the TV and thought It looked amazing. My mum put Loose Women on one day for me and I loved it, then watching the show became part of my routine. Then one day I said it’s my dream to visit London and to meet the Loose Women. After this was said CAMHS, Great Ormond Street and other professionals involved in my care came up with a progress chart to help me achieve those dreams. If I moved an arm or held something in my hand etc I would get a point so that would mean I am one step closer to achieving my dreams.
The road to progress
Eventually, after three long years, my physical health started to improve. I slowly started to learn how to move my arms again and to feed myself. My biggest achievement of all came when my body slowly started to learn how to sit up again. I woke up one morning and my body didn’t feel so stiff anymore. My head used to be on my knees when I was transferred to any type of equipment, but that morning for the first time in years, my head was slightly off my knees—only by a little bit, but that was a huge achievement. A few months later and my body slowly became more tolerant of sitting in other types of equipment.
Due to my FND, I wasn’t well enough to return to school so I was home tutored, funded by the council. I had a wonderful three years with my home tutors, we did day trips, sensory play, rehabilitation sessions, food tasting, baking and lots more fun activities. You can see what I got up to and my rehabilitation journey on Simply Sensory’s Facebook page.
Getting back outside
My first outing in years was to collect my new wheelchair from the hospital. It was only the hospital, but to me it felt like a whole new world ready to explore—a big moment for me after being bedridden. It was a self-propelling wheelchair, and as I wheeled out of the room all the staff on the unit, patients, and those who were with me, were clapping and cheering me. It was a proud moment and a day I’ll never forget. It was the start of my adventure and new life learning to live with FND.
I was then off to London and it was everything I had seen, heard and imagined. I’ve been back many times since to my favourite place. The Loose Women heard about my story and sent me a video message then a few months later I was invited to the show and met some of them, since then I’ve met 15 Loose Women!
Nine years on from my life changing illness, I’m slowly starting to recover and learning to walk again. Doctors aren’t sure if I’ll ever make a full recovery due to the impact of having severe FND but I now know that I can learn to live with my FND. For five years I was unable to walk but I’m now able to walk with support and can stand unaided. I’m looking to raise awareness about FND and show the life-changing impact the condition has.
Although the impact is still felt in my body, in recent years I’ve made huge progress in regaining my mobility and speech. I’m rebuilding my life and the future is hopefully looking brighter for me because I know if I can get through all of that I can get through anything.
Even if it doesn’t show in a scan, it’s still real
My message I want to get across is that just because FND doesn’t show up on a scan, doesn’t mean it’s not real. FND is a very real and a debilitating condition which needs more awareness and understanding. There’s been times my FND symptoms haven’t been understood and this is what I’m trying to change, by sharing my story I hope by doing.
I’ve had a very long and emotional journey with my FND. My next goal is to go abroad to Cyprus. I also want to say, never give up hope for the future even if something looks impossible, dreams can come true.
I’m also on Instagram where you can follow my journey, adventures and lots more.
Disabled Children’s Rights are Under Attack.
We’re fighting, but we can’t do it alone: we need your help more than ever.
We’re volunteer-run, but costs are rising. To help us keep going, please consider a one-off or, if it’s possible, a regular donation.
Read more about being a regular donor here.
We use Zeffy to fundraise, which doesn’t charge us a fee, so 100% of your donation reaches us.
Also read:
Key Content
Also read:
- Beyond EHCPs: Why Inclusion Needs More Than a Document
- The Unacceptable Truth: 20 SEND legal rights at risk from the Government’s SEND reforms
- How health and family support systems are failing children starting school
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals
- When things go right: Shining a light on SEND Practitioners making a positive impact [Giveaway!]
- From suspicion to support: why the Government’s child protection reforms matter for disabled children
- Have your say on the future of transport for disabled children and young people
- Unison voices major concerns over SEND reform health plans for sick and disabled children out of school in the EOTAS consultation
- Top Tips for the EOTAS & EHCP consultation: Protect your child’s rights to statutory SEND support
- Navigating constraints: Why a former PCF chair thinks the current model is missing the mark for families
- Dear Secretary of State for Education, Lucy Powell: an Open Letter from Special Needs Jungle and SEND legal charity SOS!SEN
- Research: Disabled young people define inclusive education as “learning in the place that’s right for them”
- Unison voices major concerns over SEND reform health plans for sick and disabled children out of school in the EOTAS consultation
- Allergy Guidance issued—but wider medical conditions guidance back for more work
- Research shows children in special schools report higher self-esteem than those with SEN in mainstream
- ARFID: Avoidant/Restrictive Food Intake Disorder is much more than just “fussy eating”
- Draft medical conditions guidance raises “serious concerns” says union, over shift in clinical responsibilities to schools
- Consultation: Supporting pupils with medical conditions at school. What’s new, what’s missing and what you need to know
- Part 2: The Testimonies. Children died; the system looked away. Will government SEND reforms make this scandal even worse?
- Children died. The system looked away. Today, the Government is calling the human cost of cutting rights, “reform” [Part 1]
- Jen’s Acorn: Offering vital school support to prevent more unnecessary tragedies like my daughter’s
What kind of government is “bold” enough to scrap statutory EHCPs from vulnerable children?May 16, 2025
The SEND reforms in the Schools White Paper reveal rights given, and rights stripped awayFebruary 24, 2026
Don’t miss a thing!
Don’t miss any posts from SNJ – simply add your email address below. You must click the link in the confirmation email you’ll receive to activate your free subscription.
You can also keep up with us by following our
Want more? Be an SNJ regular donor!
SNJ is a non-profit and everyone who writes here does so voluntarily. We need your support to help us with costs by donating once or as a regular patron. Find out more here
- WEBINAR RECORDING! The implications for children’s legal rights to EHCPs and EOTAS of the Government’s SEND proposals - September 3, 2026
- From suspicion to support: why the Government’s child protection reforms matter for disabled children - August 28, 2026
- Have your say on the future of transport for disabled children and young people - August 25, 2026
Please share this article!
Discover more from Special Needs Jungle
Subscribe to get the latest posts sent to your email.
