Does a diagnosis change things?

My daughter was diagnosed with Bohring-Opitz Syndrome (BOS) on May 9, 2015. She was 20 months old at that time. We knew about a week in advance that whole exome sequencing showed a mutation, and the genetic counselor wanted us to come in at the earliest possible time. We had to drive down to Orlando and take the day off work. I was nervous about getting the diagnosis, but I was also excited to finally have an answer. Every test prior had come back “normal”. But my daughter was not displaying normal development. She was severely behind at this point, so we had long ago given up the idea that she just “needed to catch up”.

I wanted a diagnosis so that we had a new path of treatment to take, and I wanted to belong to a community of support other than those who were all grouped together as…