Thursday, October 25, 2012

Mother's Love, Publicity and SMA












SMA is getting a lot of publicity these days, and rightly so if you consider that 1 in 40 of us carries the gene for SMA, and I think that the publicity is gaining momentum and we - the global SMA family - are spreading the word.  From the early days of Lucy and Ethel; to Tilly the ballerina and the story of her family; to the beautiful Gwendolyn and the awareness her parents are creating; to our own humble Touch & Tickle and Get Beatrice Mobile with independence as our goals, to Estella and her parent's plight to smash SMA and Avery with her tear-jerking bucket list; and now to the latest addition, George who is looking to befriend an infamous Dragon so that he too can explore this beautiful world.


Spreading our story and gaining publicity has become easier with the advent of social media: everyone can publicise their story and promote it through, for example, Facebook and Twitter, and all by the touch of a button - hit "enter" and the whole world can see your story.  Why are we spreading our stories?  To be honest, I don't think that it's about SMA or about disability in general -even in the light of the Welfare reform and the amazing spectacular that was the Paralympics - I think that it's about something far more humble and profound; 
it's about a mother's love
It's about mum's speaking out about their experiences; it's about them challenging and channelling their grief into something bigger and more positive than the whole of the disease affecting their child; it's about doing the best for their child, pushing harder against the NHS and social services, advocating for their child until their child's voice is loud enough to shout for themselves; it's about fund raising for a child worth while, a child so precious that family and friends and complete strangers will give to them instead of a bigger charity; it's about spreading awareness and sharing your experience, not wanting others to be alone; it's about a mother's deep, profound love for their child and wanting to do anything that makes their child's life better...


I haven't read the Sunday Times article yet, I haven't "met" - virtually or in real life -  George and his family or heard their story; I, however,  have a vague idea of the rebuilding of their hopes and dreams and the life that they are living now that SMA stands amongst them.  I'm very aware that I wish that I could take SMA away from their lives, cure their heart break and make it all better, but I can't and no one can...  But I can tell them that George's personality will far outgrow his disability; that life with a Snappie is wonderful; that powered mobility will offer George so much independence; that Snappie will become very much part of family life, taking on a personality of it's own; that a new "normal" will be achieved and that happiness is so very possible... it's about choosing how to life with SMA... 






and to discover more about george, go to aboutgeorge.co.uk - i will be (sometime soon...)



3 comments:

Midlife Singlemum said...

I hope they read this. They would surely gain comfort from your experience and support.

BavarianSojourn said...

I hope they read this too. Social Media can be a wonderful thing in raising awareness. x

Susanne@Babyhuddle said...

I've been following Estella's story for a while and I have to agree that more awareness is needed. Thanks for sharing your blog, I will be reading more
xx