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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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Posted by
Marci Scher
Rough Nights - Possible "New" Normal
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Posted by
Marci Scher
New or Old SMA Family....
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Posted by
Marci Scher
JUST ANOTHER DAY AS A CHILD LIFE SPECIALIST
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Posted by
Marci Scher
The Ugly and The Beautiful
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Posted by
Marci Scher
RARE DISEASE DAY UPDATE
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