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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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Showing posts from November, 2018
Posted by
Marci Scher
10 Things Having a Rare Disease Isn't
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Posted by
Marci Scher
Grateful and Grieving
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Posted by
Marci Scher
You Didn't Deserve To Die
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Posted by
Marci Scher
Choosing how you want to live…and die -- National Hospice and Palliative Care Month
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Posted by
Marci Scher
Why This Photo Series of Babies With Disabilities Has the Power to Be Revolutionary
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