Away days

The opportunities to be away from family especially if your main caregiver is a parent are quite rare. The longest I've been away from my mom was a 3 day trip to the coast of South Wales 14 years ago. It was organized by school.

I had a fantastic time but I did miss a few home comforts! Everyone does when their off camping etc. It was a packed full trip, visiting a canal, a police centre, a spa and a coastal town. Incredible we got it all in!

Extract;
The weather was glorious. Hot sunshine washed over everything glinting off many
metal surfaces. We posed for photographs by one of the large monuments dotted around the bay while the gentle sea breeze cooled us.
Our second destination for the day was a police facility in the nearby town... After a twenty minute journey meandering through heavy traffic we pulled into a huge grass covered complex. A ... police car was waiting for us and two police officers were standing by it in their uniforms. We were all in awe as we’d never seen a police car up close before.

To read more about my rare visit out and see all my other highlights then buy my book here; 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.