A must read!!! This is an astonishingly well written story. I am very picky about what i read and put many down without getting past then first few chapters. I am usually not a fan of UK based books because I get lost in the language but this book...oh this STORY. It got me immediately. I am a pediatric nurse. My job is to care for very special children in their homes. I face BOTH worlds presented here every day. I deal with parents who have made impossiblei choices. I know very little about the UK medical Trust. So I can't comment on how things are done in real life situations but know in the US once they find a problem in pregnancy the health professionals encourage termination. As much to preserve the family unit AFTER as to reduce suffering and pain. Once that infant has been born they tend to switch sides in that take on a militant like stand of "if we can save them we should". Perhaps they tell the parents what is to come, maybe not. Most patents I work with say they were not told that their reality was even an option for an outcome. Most are told they will live or die. To live the parents imagine, first words, walking, birthday parties...not feeding tubes, seizures, constant vigilance against the progression of symptoms and the need to medicate them just so they can sleep without crying out in pain. It is my job to care for those children who are alive but not living. They are caught somewhere in between. It is sad and joyful at the same time. When they laugh it is like sunlight breaking through the clouds and just for a second you can see what might have been. It is an honor to care for them, a privilege , but there is a cost. We nurses and parents alike tend to get a cynical outlook towards the medical establishment and what their motives truly are.The way this story was told is unusual and yet for this story....necessary to get the full effect from both sides. I stumbled on this book while browsing for a quick read and was able to borrow it in ebook form from my library but it is one I will be buying to add to my living room bookshelf.