This year, I am focusing on different people with Niemann-Pick Disease, one of the 7000+ rare diseases, and the one that took the life of my only son.
The first child is Katha. She is in Canada. She had a similar journey to Dan, including the long road to diagnosis. Katha is about 9 now and is still doing very well. Her mom has started a blog to record the symptoms and progression so others will know. Every child progresses differently.
You can read more about Katha here: http://ourunwantedjourney.blogspot.ca/