Unfortunately too few people are aware of what Motor Neurone Disease actually is or who it can affect. My mum left this world due to it in the year that Emily was born, the year after I married George and only four months after Emily joined us.
In the future after this I never thought that I would get it, that’s how you should live your lives. Lots of people live with genetic diseases in their families.
When I was diagnosed with it at the beginning of 2015 I first thought why me? I’m so young, it only happens to older people. This was a wrong thought to have. After I got over the diagnosis I started to look on the internet to find out about MND. Not what would happen to me, I already knew that, it was to find out why it happens and who it can affect.
I know I’ve already talked about this but it’s in my mind again so I’m just writing it down, this really helps. I couldn’t believe it could attack anyone at any age, this is one of the most important things that people should know. I thought I was young at 35, but when I went on to Twitter and the internet I found lots of people who were younger than me. This made me feel better as I knew I wasn’t the only one living and fighting this disease at quite a young age.
I now know about some people on Facebook and Twitter who are even younger than me, Gordon in Scotland and Joanne in Stafford. Their stories are nearly like mine, the early symptoms and diagnosis at around the same time. They are doing great work, raising awareness, fundraising and staying positive.
In the future I want to meet them and other people who are around my age and raise awareness of it happening to younger people, I still can’t believe it can even attack young children.
Unfortunately as MND can take you out of the world in a few years and there is no cure for it too many people don’t know about it. Also with only one national charity it just doesn’t get enough attention. I want to make sure that for the rest of my life I’ll raise awareness and make sure more people know about it. I’ll leave my legacy behind and hopefully what I do will be seen by people who can change things.
If you can offer any help to promote my legacy please get in touch.