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 24, 2014

Rare Disease Month - Day 24



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 John in Italy.  John is now 10 and they are trying to get approval for an experimental treatment.  You can read their story here (in Italian). 





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