Welcome! This is a personal blog to document the journey of our family, as we battle with my daughter Maddilyn (Maddi) to heal and live our life with Autoimmune Encephalitis.
I’m Tricia; I’ve carried two babies, Maddilyn (5yo) and Jaxon (1 yo) and help parent Alex (12yo) and Ashlee (11yo), married to Jason for 6 years.
I decided to document the journey of my daughter Maddi, while she undergoes treatment for Anti-NMDA Encephalitis, in hopes that one day our story can be helpful in diagnosing another child. I also wanted to shed light to the fear, anxiety, and shame that a diagnosis like AE can create, so other parents can relate and know that they are not alone.
There is very little information about NMDA Encephalitis, interchangeably known as: Anti-NDMA Encephalitis, Autoimmune Limbic Encephalitis, or just simply, AE.
When we got our diagnosis, I scoured the internet for information regarding AE. I hardly found anything that was helpful. AE is rarely diagnosed, even if it is more common than we realize. AE presents as a complex host of symptoms, and for most people, it is often misdiagnosed as a psychiatric issue, as Maddi’s was. Had it not been for the great relationship we have with her Pediatrician and my knowledge as a Mental Health Counselor, I cringe to think how much more Maddi would have had to suffer.
The last 6 months of our life have been a whirlwind of chaos, but in that, I’m thankful that Maddi only got really sick in the last 8 weeks. I’m thankful daily that we have a diagnosis, but I mourn the trauma and suffering she has been through, and continues to go through on a daily basis. I pray each day that our sweet girl will be healed completely and returned to us.
I hope that through our story, someone can find peace and understanding, or even inspiration to push their medical team to test for this rare disease.