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Lili was a typical 13-year-old girl who loved reading, writing, and traveling, even aspiring to become a global journalist or news reporter someday, according to a GoFundMe launched for her medical expenses.
At the end of March, Lili came home suffering from a bad headache that turned out to be the result of her first seizure.
“That seizure took away her ability to speak, and she suffered from paralysis, leaving her completely helpless,” reads the campaign, launched by Samantha Curran.
The next several days were spent in and out of medical offices and hospitals before Lili was sent home with an unfulfilling and mysterious diagnosis of severe anxiety.
Though the family knew something was still amiss, they had no choice but to carry on and help Lili regain her speech as she underwent even more testing.
“Lili and her mom…accepted this diagnosis and worked hard to get her life back to normal, to get her strength back, her speech back, and to keep moving forward,” Curran writes.
Lili went through another seizure and hospital stay about a month later before undergoing another series of tests and finally receiving a puzzling diagnosis.
“After lots of tests, and consultations, including a spinal tap, Lili was diagnosed with a very rare brain disease also known as Autoimmune Encephalitis,” Curran says.
Autoimmune Encephalitis is a brain injury that causes severe mental and physical health fluctuations.
Lili is now battling the side effects of AE while trying to maintain a normal life.
“AE has changed the direction of Lili's entire life,” the fundraiser says.
“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…”
More than $9,000 had been raised on the campaign as of Wednesday, August 10.
“I am a firm believer that it takes a village to raise a child,” Curran writes.
“I have seen firsthand how a community can come together in a time of need, especially when it comes to a child.”
Those interested in following Lili's journey can look at her Facebook page, Lili's Autoimmune Encephalitis Journey.
Click here to view/donate to ‘Help Lili fight Autoimmune Encephalitis’ on GoFundMe.
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