In early 2016, our family was turned upside down when our daughter began to exhibt a series of dramatic and violent personality and behavioral changes, that quickly escalated into Neurological and Cognitive dysfunctions which ended with an induced coma. On May 17th, 2016, Maddilyn, or Maddi as she prefers, was diagnosed with Autoimmune Encephalitis- NMDA Receptor Type. At that time neither my husband, myself, our family, or friends had any idea or understanding of this diagnosis. This is my recount of our journey from the moment of diagnosis, the months leading up, her aggressive treatment, and recovery over the last 10 months.
My goal in sharing Maddi’s story has always been to spread awareness for Autoimmune Encephalitis. Autoimmune Encephalitis or AE for short is a rare disease, with only 900+cases diagnosed since 2007. AE is rare, but only because there is a lack of awareness. My hope is that somewhere out there, someone will read her journey, and through it, find a diagnosis themselves. I aim to share my personal experiences of this journey, as her Mother, in a hope to reach out and connect to parents who are struggling with the emotions, pain, trauma, and stress of caring for a child with Autoimmune Encephalitis (AE).
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