3 thoughts on “Contact Team Rachel”

  1. …..mother or 3……my 7 year old son has just been diagnosed with JNCL. I struggle to form a thought, let alone breathe….we found out 2 weeks ago and I haven’t taken a breath since. How is this explainable to a child that hasn’t been given the opportunity to experience life? And his older brother….and baby sister.

    It’s been a year since I can remember my baby having a real sense of normalcy.

    Although there are frequent, momentary lapses of composure…I am his mother and I’ll be damned before
    I lay down and let the diagnosis define
    our life(s). Not without 1 hell of a fight.

    I’m in need of guidance and ass kicking support….


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