Childhood complacency...

When I was younger and in the wheelchair for the first time, I thought that was the way I'd stay pretty much all the way through life. Somehow even though I read about the later stages of DMD I thought everything would carry on as it was. I just couldn't connect the future applying to me in any way, "surely that won't happen to me". I had a wake up call later on in my teenage years and that trauma changed my outlook, my childhood complacency had gone;

Extract; .....I was going to be another year older, but I never really thought things were going to get harder. I just imagined being the same, that this was all that
there was [to] DMD...

Read about my wake up call in my book DMD Life art & me; http://duchennemen.net16.net/buymybook.html




Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time.