Your Stories

I’m just on my way down to pick Aideen up from the Special Care Unit which she attends Monday to Friday from 9 till about half 2. And Aideen’s Special Care Unit, this week are having their fun week so I decided to dress up as Captain American to try and fit in with them all down there.Aideen is 12 now and when she was born we never got a diagnosis... Read More
Ann-Marie: When Katie got out of hospital, she had a central line in so we had a visit from the community nurse, quite regular. And she knew, the community nurse knew that we were … not struggling … we were glad to have Katie home, but when you don’t have that medical [team] behind you at home, you know, you were used to that nine months in... Read More
Basically Matilda was palliative care from she was five days old. It was 10 to 5 in the afternoon on a Thursday and the consultant said, ‘your little girl has a very serious condition, it’s called Edwards Syndrome, Trisomy 18’. And my husband and I immediately began to cry because she definitely had a diagnosis of something. I had never heard of... Read More