Making memories for our young family as we live with Motor Neurone & Fabry's Disease

Our Story


I met Liz in November 2009 and we married less than a year later in August 2010, after a whirlwind romance. We were over the moon when we found out we were expecting our first baby in October 2011.

Things changed when I started experiencing worrying symptoms, which began with weakness and muscle loss in my right hand, tingling down the left side of my body and slurred speech.  I was eventually diagnosed with Fabry Disease in November 2012, after numerous appointments and tests. Fabry Disease is an extremely rare, life limiting condition. A build up of toxins slowly poisons the body causing global organ damage and death.  We were absolutely devastated when we were told that the condition was genetic and we realised that our 13 month old daughter, Lilly and our unborn child would be affected. Coming to terms with the diagnosis was really hard for us both, but life goes on and we were delighted when our second baby, Poppy, was born March 2013.

Unfortunately my symptoms continued to progress and I began to experience weight loss, twitching and muscle wastage in my arms, shoulders and chest. I started tripping and falling and soon earned a season ticket to A & E.  I was subsequently diagnosed with Motor Neurone Disease (MND) in August 2013, at the age of 37. As if having one terminal illness wasn’t enough, lucky me! For those of you who don’t know, MND is a rare, rapidly progressive illness that damages the nervous system leading to weakness, muscle wasting, severe disability, paralysis and death. The victim is unable to move, speak, swallow and eventually unable to breathe. Death usually occurs within 2-5 years, but half of those affected die within 14 months of diagnosis. I’m still here and still fighting, after all I have a lot to live for.

I have gone from a fit an active bloke who loved skiing, grass tracking, motor biking and fast cars, to a guy who can't shower, dress or feed himself and who is confined to a wheelchair 24/7. I love my family to bits and I desperately want to be the best father and husband I can be, but I feel like I am failing. I can’t rough and tumble with the kids, play ball with them, chase them or even pick them up.


Since been in a wheelchair we have made some fantastic memories, both with the girls and for the girls to look back on.  Most of these are documented in my blog, videos and gallery.  We have managed 5 holidays abroad including Florida Disney world and more recently Turkey.  Challenges have become a large part of our lives and we do them for charity, including MNDA and Marie Curie. Events like longest zip wire in Europe and the fastest in the world, climbing Mt Snowdon and Abseiling from the Humber Bridge.

It hasn’t been a bed of roses though. Along with been confined to a wheelchair, I have had a gastronomy inserted, supra pubic catheter fitted which then caused sepsis, this very nearly took my life.  I had a port fitted to allow easy access for my fabry’s treatment, on coming out of theatre I was totally paralysed, temporarily.  Suffer numerous chest infections and bouts of being completely peg fed. I have gradually lost my voice to the point only those I see on a daily basis can understand me and use a communication device programmed with my own voice; this was done in Edinburgh by a research project at the Ann Rowling Clinic.   Despite everything my strength to carry on is my wife and girls.  We have more challenges and opportunities planned including when the time comes an elected tracheotomy. Long may my fight continue.


Jason Liversidge