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 3, 2014

Rare Disease Month - Day 2

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.

This entry focuses on 2 siblings: Zachary and Ashlyn.  This family lives about an hour from me.  I have been blessed to meet Ashlyn, her sister, her mom and her grandma.

But I want to talk about Zachary first.  This cutie was only here for 3 months when he died of liver failure.  He was finally diagnosed with NPC when Ashlyn was born a few years later.

Little sister Ashlyn has had a difficult road.  She was first diagnosed with NPA and then finally diagnosed with NPC.  She has battled seizures and severe medical interventions and complications.

You can read more about Zachary, Ashlyn, and healthy baby sister Arieanna on Facebook at Love for Ashlyn and at Go Fund Me


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