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, October 21, 2017

October Awareness continues

If you have followed this blog enough, you know that October has a push for Niemann-Pick Disease Awareness.

If you are new, you can read the detailed story as to why this is so important to me.
For the short version, grab a tissue.  My son was diagnosed with Niemann-Pick Type C at age 4 1/2.  He died from disease complications before he turned 5.

Well before I knew this rare disease existed, and well before we were personally affected, October was designated as Niemann-Pick Disease Awareness Month.  We have an uphill battle each year, against some other more well known diseases. 

But the underdog has continued to rise - with your help.  By sharing my blog posts, sharing from the National Niemann-Pick Disease Foundation Facebook page, and donating, the disease is being identified earlier and treatments are becoming available.

So thank you.  If you are an affected family, please reach out to me.  I am happy to listen, talk, share my experience, and help you find resources to support you.






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