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.

Thursday, February 20, 2014

Rare Disease Month - Day 20

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 is Natalia, a 4 year old girl in Spain.  Natalia has the Ommaya reservior in her brain to deliver her cyclodextrin.  Here is an article (in Spanish) about her mother's fight for rare diseases: http://www.lareferencia.net/2013/03/20/el-congreso-de-los-diputados-muestra-su-apoyo-a-una-nina-murciana-enferma-de-niemman-pick-tipo-c/ 

Click this link for English


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