The girl they said would live for days is 4 years old

IMG_2219Well this is my first entry. I felt the need to share our story with the wider world to hopefully give some hope that things can turn out a lot happier than you think.

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.


6 thoughts on “The girl they said would live for days is 4 years old

  1. Amazing story and so well written, I can feel the love from each word.
    We’re only getting to terms with our diagnosis but it’s refreshing to read there is light at the end of the tunnel and our emotions are all ‘normal!


    • Hello, I am glad if it helped in some way. I wish you all the very best on your journey. We have since learned that there are quite a number of children doing much better than expected and giving much joy, and having a great life x


  2. Amazing – you are such an amazing lady, and it’s great to read such a frank and honest description to give others hope and strength x


  3. My friend sent this link because I am a midwife and mother and having to fight constantly for my son who has autism. I am always telling him he is not defined by his condition. Its just something he has to work with and overcome and he will do it. You and your family are an inspiration to anyone who has to fight for their child regardless of their difficulties. I have so much respect for you all especially how you have responded to the professionals who proport to be experts. I wish you all well. No-one knows how long they have to live. They just need to enjoy the life they have. Thank you for sharing your story.


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