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.

Monday, February 17, 2014

Rare Disease Month - Day 14

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's focus is on Julia from Florida.  Julia was diagnosed in October 2011 at the age of 11.  She has been part of both NIH clinical trials, including having brain surgery twice.  Her story can be followed here: http://www.juliasjourney.net/index.html


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