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 5, 2014

Rare Disease Month - Day 4

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.

Siblings Cody and Kayla have been accepted into the NIH trial of cyclodextrin.  They are blogging about their experiences in the trial here: http://www.codyandkaylaontheroadtoacure.net/  Their first trip is documented in the "On The Road Journal".  Their second trip is in the middle of February.


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