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.

Saturday, February 22, 2014

Rare Disease Month - Day 22

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 JP.  JP lives within 15 minutes from me and has recently been diagnosed.  JP and his family have been very proactive in working with the medical professionals and making sure he stays as healthy as he can.  JP's family has rallied the community around them.  He was recently made an honorary police officer.  You can see an article and a video here.


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