Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

I called University of Chicago’s genetic lab department because I wanted to know why Lily’s diagnosis was so plain. A deletion involving exon 1 on her CDKL5 gene. Most other CDKL5 families have a far more intricate diagnosis and I was jealous. OK probably wrong word choice, but I did want to know more than …

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