She was diagnosed with Anti-NMDA Receptor Encephalitis on November 5, 2019. She was 13 years old then, and turned 14 on March 15 this year.
Our healthy daughter was showing the exact opposite of herself. She was very healthy and athletic. She has a blackbelt in Taekwondo and was bagging gold medals left and right in combat tournament.
All the standard symptom of encephalitis were there. It was very hard to understand and we were very shocked to digest the sudden alteration of our lives.
The early recovery period was the toughest. The IAES Facebook group witnessed how scared and frustrated we were as her parents. She didn’t sleep for 2-3 days. And when she did sleep it was only for 5-6 hour at a times. Often she had tantrums. Crying, shouting and there were times that she just snapped and hit anyone in our house.
Today, is June 1, 2020. Almost 3 weeks that she has been showing very good behaviors. She sleeps on time now and for a good 8-10 hours. Our house is filled with laughter again. She has become funny again. She loves playing with her dolls again. Art, music and movies are her pastimes. Unlike before when she could not sit for more than 5 minutes. She takes her medicine and milk by herself now. She can now take care of herself in the bathroom.
This illness is too much and no one deserves it. Many people helped us during the hard times. And we cannot thank them enough, especially those who prayed for us. Who helped us to understand her situation. And of course, the IAES Facebook group. It helped us know more and understand more. And I thank God for the everyday miracle.
Your generous Donations allow IAES to continue our important work and save lives!
Become an Advocate by sharing your story. It may result in accurate diagnosis for someone suffering right now who is yet to be correctly identified. Submit your story with two photos to IAES@autoimmune-encephalitis.org
International Autoimmune Encephalitis Society (IAES), home of the AEWarrior®, is the only Family/Patient-centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey. Your donations are greatly appreciated and are the direct result of IAES’ ability to develop the first product in the world to address the needs of patients, Autoimmune Encephalitis Trivia Playing Cards. Every dollar raised allows us to raise awareness and personally help Patients, Families, and Caregivers through their Journey with AE to ensure that the best outcomes can be reached. Your contribution to our mission will help save lives and improve the quality of life for those impacted by AE.
For those interested in face masks, clothing, mugs, and other merchandise, check out our AE Warrior Store! This online shop was born out of the desire for the AE patient to express their personal pride in fighting such a traumatic disease and the natural desire to spread awareness. Join our AE family and help us continue our mission to support patients, families and caregivers while they walk this difficult journey.
My Daughter was diagnosed several weeks after yours on the 21st of November and has not made as wonderful recovery as your daughter has she still not happy or playful doesn’t enjoy her toys she was 5 when diagnosed and is now 6 and is very angry much of the time. Count your blessings.
Thank you for sharing your daughters lovely story.Most importantly ,happy ending is an enormous mental support for parents,family and caregivers.Thank you and God bless to your daughter!