I have been doing some thinking on the best way to start the blog as having a history is needed….I am going to do a brief history and then go back and detail the things which over time I have realized were important although at the time I may not have realized were. So before I even get started I want to apologize if at times it seems as if I am all over the place. So please bare with me as I get myself up and running and learn more about blogging as well as retelling our story.
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Our families journey with a life threatening neuro-muscular disease, from searching for a diagnosis to end of life challenges to the grief roller-coaster. PCH1A, a altercation of the VRK1 gene
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