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.

Wednesday, February 19, 2014

Rare Disease Month - Day 17

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 Taylor in England.  Taylor is currently on Zaveska, the only oral medication that has any small beneficial effect on NPC.

Taylor has an open Facebook group to provide support: Taylors Battle


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