Yes it is devastating to hear the doctors tell you that your child has a syndrome, a disease, an illness, but, believe it or not, for some it comes as a relief after a long journey where not knowing has been far harder. A diagnosis, especially for parents who were unaware that there was a problem, can change a family’s hopes, expectations and goals in an instant. With a simple word, parents become part of a community of people who have had the same conversation with their child’s doctor. A diagnosis makes you have a connection, it gives you a reference point, a place to start. You get handed a name of a ‘thing’ to fight, hell if nothing else at least it gives you a neat summary to stick on the endless forms you have to fill in.