Alex, my daughter, was in her second year of psychology when she was diagnosed with Anti-NMDAR autoimmune encephalitis in 2015 and this is her story:

May 9, 2015 (Saturday Morning), I received a call from Alex complaining that she had something buzzing in her ear and that it is making her uncomfortable. On the same day in the afternoon, I received a call from my sister telling me that Alex had collapsed and she was brought to the nearest hospital. When she woke up, the hospital staff, without proper diagnosis, wrongly accused her of taking prohibited drugs just because she was shouting, hallucinating and was very disoriented. My family was enraged hearing the nurse questioning if my daughter was on drugs. To my dismay I asked my family to transfer Alex to another hospital and I booked the next available flight back home.

For her 5 days in the hospital, she was under observation, bloodworks and laboratory tests were performed and all the results were negative. The doctor, based from Alex’s actions and the way she talked, diagnosed her with depression and referred us to a psychiatrist. As a mother, I know my daughter so well, and in my heart and in my mind, there is no way that Alex was depressed. I knew it, something was wrong so I and my other daughter visited the psychiatrist one time only. I believed it was a misdiagnosis. My family, friends, Alex’s friend and teachers were with me.

Because the hospital couldn’t find anything wrong with all of the tests they performed, Alex was discharged and we brought her home. At home, we noticed that she was acting unusual, she hallucinated, she was disoriented, and she started to lose weight.

Our house was always full with visitors, that’s how loved Alex is. One day Alex started to have seizures but we still didn’t bring her to the hospital until one morning when my husband woke me up and told me to call for an ambulance because Alex’s seizure was unusual and she was hyperventilating.

We already have struggled with our finances, so we chose to transfer to a not so expensive hospital but all her tests were done in one of the best hospitals.

While I was at work, the neuro called me and asked me how Alex was, her movements, the way she talked and other unusual things that she does. We talked for almost an hour, that’s when the neuro told me that based on my information, she suspected it was an encephalitis. She recommended a brain CT scan and that’s how we come to know that her right side of the brain was swelling which caused her severe seizures.

The neurologist requested a lumbar puncture to determine what causes the swelling. The cerebrospinal fluid, extracted from Alex, was sent to Spain for diagnosis since, sad to say there was no equipment in the Philippines capable for such test during that time.

While in the hospital, Alex’s health declined even more, she lost so much weight. Her seizures were too scary to watch. The neuro suggested that we tabulate her seizures everyday, how many seizures she had for the day, how many minutes does one seizure last. She suggested to put colourful things and happy photos inside her hospital room and encourage every visitor to tell happy stories to Alex. While Alex struggled for her life, we struggled emotionally and financially.

When the doctor told me about the procedure and the medication, honestly I was lost, I don’t know where to go, how to get the funds but I was even more lost when the neuro told me that we cannot proceed with the procedure of treating the swelling of her brain because we need to treat her pneumonia first which developed because she was bedridden. I asked the neuro if we wait for another four weeks to drain her pneumonia before we can do the medication for her swelling brain, will Alex still survive? What the neuro told me, lifted my spirit up. She told me, that Alex is so strong, she’s a fighter, imagine she was misdiagnosed for a month but she’s still fighting. While waiting for her pneumonia to drain, Alex fell into a coma. My heart was heavy but no tears. Visitors keep coming, emotional, spiritual and l financial support from family and friends were overflowing, we are so blessed to have such people around us.

Almost 2 months had passed since Alex fell into a coma, there was no progress. Her food was through nasogastric tube feeding already (food through the nose). While I was away working, I monitored Alex everyday through my phone. I offered daily healing mass, I woke up every 3 am to offer a prayer, and asked the almighty that his will be done, but deep inside me, I cried losing is not an option.

One day, my best friend, (I considered her Alex’s second Mom), called me up and told me, to prepare myself for the worst. But the following day, I was sent me a video of Alex smiling and holding a balloon. Alex is a living proof of a miracle.

Moving forward, Alex had a short memory loss, she can’t remember some of our relatives and friends. Her memory stays from the day she collapsed and after that, she cant remember anything. She woke up but she can’t walk, she was wheelchair bound and didn’t know how to use her hands. So my indefinite leave was dedicated to assist her on her post check-up, her physiotherapy so she can walk again and her occupational therapy to manage her hands. We started from scratch, teaching her to write again, how to manage her hands. She celebrated her 18th birthday, wearing a beautiful gown but barefoot because she couldn’t control her feet if she wore shoes.

She still has problem walking, but she still manage to dance, smile and enjoy her second life.

While Alex struggled to get back to her normal self, and preparing to go back to school, I tried to convince her to shift course and psychology might be too much for her. But Alex told me no way she would shift course as she love psychology and that she know she could make it.

For all the struggles we’ve been through. We can’t blame God, but trust him instead for nothing is impossible with him. Yes, losing is not an option for us but we have to accept God’s will. And I did not name her Alex for no reason.

ALEX IS A WARRIOR, SHE IS AN ENCEPHALITIS WARRIOR.

Story published September 2025