It's been just over six months since we got the diagnosis, and almost six month since Marian started treatment. This time last year, almost exactly, I was in shock knowing Marian may and likely has a fatal genetic disorder. I was carrying her around everywhere because she couldn't stand. I was so afraid. I sent a lot of emails. When we got the diagnosis, I felt filled with fear of what the next six months would bring, would it only be getting harder, sadder, more heartbreakin