A photo sent to me by Ian's hospice nurse, Erin, on May 1, 2017 wishing me a happy belated birthday. I laughed and cried at the same time.Search This Blog
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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