When our daughter Isabel was a few days old she was diagnosed with Edward’s syndrome, a rare genetic condition. If you google it you will find grim reading.
She is now 4 years old. Its not all been plain sailing. There have been some scary and some difficult times. She has significantly delayed development, and can’t yet walk or talk. But she is a loved, happy little girl with a feisty character and we wouldn’t be without her.
So, our first message is that the textbooks and the doctors don’t always get it right.
We are hoping to share a bit of our story, mainly to help anyone going through any similar sort of time. And of course to tell another side of her syndrome to the one you will hear from other places.