Each day Alex is growing that bit older, he’s now six and half years old and for him he can’t wait until his next birthday – to be that bit bigger that bit older just like his older friends. Kids they just can’t wait to grow up, full of expectation and anticipation so much to look forward to. So why do I feel so glum when he wants to grow up so quickly?
Following last week’s Action Duchenne conference I’ve been reading lots about potential new treatments and trials – and this fills my heart full of hope! But with that hope comes deep disappointment. Its not happening quick enough! Articles on the web state that boys with Duchenne will plateaux in terms of physical ability between the ages of 6-8 then their little bodies start to show real tell tale signs. Their poorly muscles become more and more scarred and their physical ability starts to decline until eventually they are wheelchair bound and left unable to do the things they enjoy so much. This is not the future I want for my little boy not if I can help it!
Each day I wake, I feel a burning desire to get up get started and do something that will bring us that step closer to finding better treatments. Some days I’ll search the web all day researching into potential treatments, exercises we can do, supplements we can put Alex on to help delay DMD’s effects. Other days I feel like screaming at the top of voice! Why does bloody DMD exist what’s its purpose and why pick on children who deserve so much better! Then on others I simply put a big smile on my face and tell the world about DMD and why they should get involved. But one thing is for sure not a single day goes by when I don’t think about DMD – its affects and what our future will bring.
An impossible wish I know but please, please please can Alex stay 6 just for a few more years whilst the science catches up?