Your Stories

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
My daughter Katie was born in 2010 at 31 weeks so she was premature. She was in hospital for the first six months of her life. After a lot of tests, we got a diagnosis of mitochondrial disease which we had never heard about before and we were told that it was a life-limiting condition; there was no cure. A colleague of my husband’s in his work... Read More