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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
A Place I Consider BeautifulWritten by Conor (16yrs)A place I consider beautiful may seem strange but to me it is the most beautiful place in the world. It is the place where my sister sleeps in a covered wooden bed with her favourite toys and a picture of my family, her blanket, earth and her precious flowers. It is her grave. mum and... Read More