SMA: My Story


    This year I was so excited to be asked whether I'd like to feature in the online campaign for #SMAAwarenessDay. A photo and quote from my review of The Calvert Trust was used and shared on all social media platforms. This recognition meant a lot to me, as I was born with Spinal Muscular Atrophy Type 2 and have been affiliated with the charity for years.

    For those who don't know much about the condition, here's an official statement from their website...

    What is Spinal Muscular Atrophy?

    "Spinal Muscular Atrophy (SMA) is a rare, genetically inherited neuromuscular condition. It causes progressive muscular weakness and loss of movement due to muscle wasting (atrophy). This may affect crawling and walking ability, arm, hand, head and neck movement, breathing and swallowing."

    Please note that they seem to have missed out key parts of the condition such as handsome good looks, witty charm and endless banter...

    My mum always says that she knew something wasn't quite right - as my mobility development wasn't the same as my older sister. After an upsetting battle with doctors and trips to Great Ormand Street Hospital - I was finally diagnosed with Type 2 SMA at the age of 2 and a half.

    Talking about my condition publicly is not something I have ever done before. Not even my closest of friends know the full extent of my story and that's the way I like to keep things. To the majority of people, I'm just Ross - your average 24 year old who uses an electric wheelchair to get around. I work, I drive, I socialise - that's all you really need to know!

    The reason I don't talk openly about my condition is not because I'm embarrassed or anything like that - it's purely because I don't want it to define who I am. I've made a conscious effort over the years to avoid reading up on the history and causes etc. Every case is completely different - I know my own strengths and weaknesses and that's all that really matters to me.

    I'm not silly, of course I know things are only going to get physically harder - but at the end of the day, none of us know what may happen tomorrow and I just don't see the point in filling my head with horror stories and negative articles.

    I'm not writing this for sympathy or attention, I'm purely sharing this post for awareness. Yes life gets hard sometimes, but hopefully my blog has proven that I'm not one to dwell on things. Little achievements mean big things for me. One of my favourite quotes is:

    "Be Kind, for everyone you meet is fighting a battle you know nothing about" - Wendy Mass

    What the charity have already achieved is amazing - and they are constantly seeking donations in order to continue their research.

    Hopefully one day there will be a cure, but for now I'll just continue being the modest LEGEND that I am. For more information, please visit: www.smasupportuk.org.uk.