Just a quick update.  I was forwarded an article earlier this week about three siblings, living in Italy, with what appears to be the same disease as Maya.  The doctors are just now connecting and confirming everything, but this is very good news.  The opportunity to share information about this disease and our respective experiences is invaluable.  

Most important is the opportunity to connect with another family and to let them know that they are not alone.

-Beau