Help Lili fight Autoimmune Encephalitis (AE)

On March 30, Lili came out of school not feeling well. She had complained of a bad headache, however, little did we know it was so much more than that. Lili had her first seizure that day. That seizure took away her ability to speak or walk, and left her in a paralyzed state where all she could move here her eyes. We felt completely helpless. She was transferred to a nearby children’s hospital where she spent the next 6 days. After running multiple tests, Lili was cleared of any epilepsy, brain tumors, or stroke and was sent home. As days went on she regained more and more of her speech where she cried over and over again that something was really wrong, begging and pleading that they would do something to help her. About 3 weeks went by, we were working hard to get her life back to normal, to get her strength back, her speech back, and to keep moving forward.

Fast forward to April 27th, almost 1 month after Lili’s first seizure, things took a major turn for the worst. Lili began to seize again and once again she ended up in the emergency room. This time nothing worked, none of the usual medications could get her seizures under control and they decided to transfer her to another children’s hospital. For nearly 2 days she had nearly non-stop seizure episodes. They finally ended up mildly sedating her to get them to stop. Lili again lost her ability to speak and communicate and was unable to walk yet again . After lots of tests, and emergency consultations with a neurologist, they performed a spinal tap and found Lili has a rare brain disease also known as Seronegative Autoimmune Encephalitis.

Autoimmune Encephalitis is a type of brain inflammation where the body's immune system attacks healthy cells and tissues in the brain or spinal cord. It is a rare, complex disease that can cause rapid changes in both physical and mental health. It is a brain injury. AE is the illness featured in a best selling memoir recently turning into a Netflix film “Brain on Fire.” However, do not be mislead by its happy ending. AE has changed the direction of Lili's entire life. Instead of hanging out with friends, going to school, playing soccer, doing normal teenager things teenagers do. She now will have appointment after appointment including OT, PT, rheumatology, neurology, cardiology, immunology, infusion center, multiple brain and autonomic tests, and PET scans depending on which antibody is causing this (results should be in next week ). And once it's under control, she still has years of recovery.

 It takes a lot of courage and vulnerability to ask for help. However, I am a firm believer that it takes a village to raise a child, and I have seen first hand how a community can come together in a time of need, especially when it comes to a child. All donations collected are to help with Lili’s medical care and treatment. They give her the chance to fight AE and live out her dreams! Even the smallest donations and prayers are highly and greatly appreciated.

Lili loves to read and write, she loves to draw and before her life changing experience, soccer was her go to sport. She always dreamed of being a news reporter or journalist that travels the world. She wants to visit Italy and Paris, see the Egyptian pyramids in person, and hang out with the elephants in Thailand. We keep fighting in hopes she can achieve those dreams one day.

Thank you so much for taking the time to read about Lili’s story and for your donation.