A Mother's Intuition....

Parents often have difficulty in persuading local health officials to take them seriously when they notice problems with their child's development. It is especially difficult for those with children who have Duchenne. A mothers intuition is nearly always right on these matters but doctors seem to discredit this. It is bad enough that your child has a life threatening disease yet it is so widely unknown by local medical teams that your parents have to practically beg to get their child looked at. If you ever feel your child is unwell then do keep onto them to get a diagnosis, because often a mothers intuition is spot on.

Extract;
...When I was about 18 months old my mother noticed I wasn’t moving around like I should have been, my sisters could run rings around me.... My mother was obviously concerned, so she contacted the health visitor and our family doctor. They were unconcerned at first and didn’t know why I was having trouble walking. My mother then had to persuade them to let me be seen by a paediatrician, they had put my problems down to over worrying on my mothers’ part, but after a few weeks they finally relented...
...It was explained to my parents that my biopsy result came back positive for a disease called Duchenne Muscular Dystrophy (often abbreviated DMD)...

To Read more about what this devastating diagnosis did to me and how my family and I coped then go here to buy my book DMD life art and 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.