A blog about the grief after losing a child to Niemann Pick, Type C, a rare disease, and how I'm moving forward with my life.

Saturday, February 1, 2014

Rare Disease Month - Day 1

It's February.  That means it is time to focus on Rare Diseases.  You can read more about what I wrote about the past 2 years by clicking on the links to the right.

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/


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