making muscle wasting history

Sometimes we can plod on and almost forget Duchenne is part of our lives. Then we have weeks like this one!
We have some exciting and fun events happening that we (me and my family) and the familes in my region have been working on, the launch of Ian Griffiths autobiography has been a highlight for me (its in the webshop and is fabulous) as I know how long and difficult a journey just writing it has been - at 26 years old he has some fascinating memories, all written with the tiniest movement of just one finger, about his life growing up, changes and challenges, his art work; it's quite an achievment for any 26 year old to be a published author. I am sure this is the first of many books we will be seeing from him. Ian is kindly donating all proceeds from our web shop sales to the charity.
Then on Tuesday, after months of preparation, we were to attend a very successful male voice choir concert; being chosen as the charity to benefit I wrote a piece for the program about Duchenne and the charity, along with a page on our personal journey. I had also prepared a short speech, knowing most in the audience would not even know how to pronounce Duchenne! It was while I was editing this that the call came from school. Josh had fallen badly.
After a frantic de-icing session on the car I glided down our treacherous road with that sick feeling and shocking realisation: despite all we do, the events I attend, how many strangers I explain this to, it hit me I had almost forgotten what Duchenne means to me, my son, my family. Why what we do is so important, vital, potentially life saving. Was today the last day Josh would have been able to walk? Is this it?
And so I found my 11 year old son, surrounded by his wonderful caring school staff, sitting on the floor of his classroom with a tear-stained face and look of shock, disbelief and sheer bewilderment. "My legs just gave up, I was standing up and then I was on the floor. Why does this keep happening to me? What did I do wrong?" After a check for broken bones and the sheer relief to find hes just badly bruised and shaken up, I took him home, pledging we have GOT to cure this, if its not in time for my own son, we have to stop anyone else having to go through all this pain and heartache.
On the way to the concert that night I was worrying, how can I stand up and talk about this when my heart is just about breaking, when Josh insisted we play his song - how he keeps being able to see the funny side is staggering - and so on it goes and hes singing and laughing "I get knocked down, but I get up again, you're never gonna keep me down". This is a child who knows what he has, he has met older lads, he knows what is around the corner, yet he remains positive and determined that we will beat this thing, we cant sit and cry for long. Doing nothing changes nothing, so if we want change, lets keep doing!
And to reinforce that message, the postman arrived yesterday with my copy of the charity calendar from Roberts & Co, an estate agent in Wales. One of the staff, Jo parsons, is aunty Jo to the cutest kid ever, Aaron. He was diagnosed with Duchenne 2 years ago, this is a family who started on their rollercoaster just as I started working for the charity, and they have fought with us for a cure, running the Love Run, then marathons, and now she has rallied staff at her work to help. The result: a cheeky fun calendar by the Risca office staff, then a second company cheeky calendar with staff from all branches posing for the cause - ladies you have got to see July - and a reminder. We are not in this alone, there are people out there who, when hearing our stories, want to help, will at times go to great lengths to do so, and that fundraising can be great fun. And today, I see that "aunty" Jo (miss December 2011) is now a page 3 model promoting the cause to everyone.
Heaven knows on this rollercoaster there are times I just want to shut my eyes and wait for it to be over, but if we are to change the course of this we have got to open our eyes and do something, and then we often find that actually the view at times is fabulous and brings us not only the tears and sadness we fear but also plenty of smiles and laughter.
Thank you to everyone out there fundraising with us, spreading awareness and especially to those "outside" of our "Duchenne-lives" for hopping on this rather crazy rollercoaster we find ourselves on, holding our hands and making the journey that much more bearable.