My name is Liam and for almost ten years I’ve been fighting severe Functional Neurological Disorder which resulted in me being bedridden, unable to move or speak.
In 2016 at the age of 13 I started to experience severe FND symptoms. Within a few days I lost my ability to walk and talk. I was rushed to hospital for testing where I then spent four months on a children’s neurological ward. At first the doctors were baffled by my mystery illness, they said I had an unknown disorder and filmed my case for medical research for universities around the world.
I had so many scans, tests and medical procedures but everything came back normal. I struggle to remember the early days of FND and life before it is a blur. My FND stopped me from knowing. It completely shut my brain and body down. Eventually I was diagnosed with severe Functional Neurological Disorder. A few weeks after my diagnosis I was discharged as there was no cure and nothing more could be done.
After leaving the hospital I was given a hospital bed, wheelchair, hoist, toilet chair, seating system, hand splints and other types of specialist equipment. I had at least 20 different professionals involved in my care. Unfortunately my body started to deteriorate again. Within a few weeks I lost my ability to sit up. I was then given a specialist wheelchair however due to my deteriorating posture this didn’t last long.
I was also diagnosed with Catatonia and Dystonia. When my body was transferred to any type of equipment my head would be on my knees. My body continued to deteriorate and it got to the stage where I couldn’t tolerate being any other type of equipment apart from my hospital bed. The only place I felt comfortable was on my hospital bed. I then became bedridden. I was bed bound for three years. I felt trapped inside my own body. For years I saw no way out locked inside my mind and body.
The following year I made some improvements. After a year of being unable to talk I slowly started to learn how to talk again with support from speech and language therapy. At first just a few words then eventually my voice fully returned. By this time my brain functioning had improved and I could understand what was happening. I was also supported by CAMHS and a specialist team from Great Ormond Street.
When I was poorly I found comfort in two things the city of London and the ITV show Loose Women. It was my dream to visit London and to meet the Loose Women but due to my illness I wasn’t well enough to go. CAMHS and Great Ormond Street came up with the idea of a progress chart to help motivate me.
Eventually after three long years my physical symptoms started to improve. I slowly learned how to move my arms again and my body didn’t feel so stiff anymore. The biggest achievement of all is that my body gradually became more tolerant of sitting in other types of equipment and I was slowly learning how to sit up again.
I wasn’t well enough to return to school so I was home tutored.
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. When I was well enough I managed to achieve my dreams of meeting the Loose Women and visiting London. I’ve been back many times since to London, it’s my favourite place and visiting the capital is part of my rehabilitation. 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, I’ve now met 15 Loose Women!
Nearly ten years on from my life changing illness I’m recovering and learning to walk again. I’m pushing to raise awareness about the illness that changed my life. I have lots of new exciting plans, hopes and aspirations.
At 13 I lost my voice, body and freedom to FND but with support, hope and determination my life began to change.
FND caused my brain and body to shut down, leaving me trapped inside my own body. But from somewhere I found strength, and resilience to fight through. It’s been a long, painful and isolating journey, but I’m learning to live with FND and I’m determined to never give up hope for the future.
You can follow my adventures and lots more on my Instagram
