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.

Sunday, February 9, 2014

Rare Disease Month - Day 8

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 focuses on Holly, from the United Kingdom.  Hollie is one of about 50 in the United Kingdom with NPC.  She has an absolutely wonderful website: http://www.hopeforhollie.co.uk/  and every year host a summer ball. 

More about Hollie can be found here: http://www.hopeforhollie.co.uk/what-is-np-c/hollie-s-np-c-journey-a-mum-s-perspective/ 


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