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.

Tuesday, February 4, 2014

Rare Disease Month - Day 3

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.

Today I am focusing in a tough little guy named Ed.  Ed is in Australia and doesn't just have an NPC diagnosis. He also has a leukemia diagnosis. At age 3 it seems like he has spent more time in the hospital than out. You can read more about Ed and his adventures with ALL (acute lymphoblastic leukemia) and NPC here: http://cure4edsharp.wordpress.com/


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