When we first got Abby's diagnosis we were led to believe that there were maybe 9 or 10 other children out there with rhombencephalosynapsis. Over the past year or two we have come to find out the numbers are significantly higher. There are so many elements of this that amazes me. It amazes me that we live in a day and age where we can find people we would have NEVER found before the invent of the internet. It amazes me that doctors can be so wrong about so many things. It amazes me that kids with RS can be so similar but also so different. It's amazing.
It's still a very rare diagnosis. Very little is really known about the prognosis of the disorder. Who knows if we will ever know why or how it happens. At this point I don't really feel like I need to know why. We consider ourselves lucky to have her.
Right now I am thankfully that I have found other RS families and other RS kids. Makes Abby feel like what she deals with others are also dealing with.