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 12, 2014

Rare Disease Month - Day 11

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 for Chase, a little boy I have had the pleasure of spending a bit of time with.  As mom Shannon says on her facebook page:  
My son Chase has a fatal and progressive lysosomal storage disease known as Niemann Pick Type C. There is no FDA approved treatment for this disease. He is still with us because he has a compassionate use investigational drug that he is receiving outside of a formal trial. It is fully regulated by the FDA. Because we have hope we take every opportunity we can to bring attention to this disease. Funding = Options and there are many right now. You can learn more about this disease by visiting www.chasethecure.net


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