Jennifer Powell takes a deep breath. It’s finally quiet as she settles into her chair beside her daughter’s hospital bed. The only sounds are the steady beeps and clicks of the monitoring machines in the dark, empty room. There haven’t been many peaceful moments lately, not since the seizures started. After checking Tia’s vitals one last time, Jennifer eases into her chair and slowly drifts off to sleep…
Hours later, she woke to the sound of her daughter screaming.
“YOU’RE CHOKING!” Tia was looking directly at Jennifer, but Jennifer wasn’t choking. She was fine. Confused and scared, she tried to soothe her daughter; show her that she wasn’t choking. But her efforts were in vain. “YOU’RE CHOKING, MOM! HELP! HELP!” She did not stop screaming until nurses ran into the room and pretended to give Jennifer the Heimlich maneuver. Jennifer was in shock, she couldn’t believe what had happened. Her daughter had just suffered a hallucination.
The next morning was even worse. “She lost… everything.” When Tia woke she could not speak and was completely unresponsive. Overnight, she had lost everything. However terrifying the hallucinations were, this was infinitely scarier. Nothing could have prepared Jennifer and Carl for what was happening. “At that point,” Jennifer said, “she wasn’t there.”
Just a few months before this, Tia started complaining about an earache. For Tia, who almost never got sick – this was unusual, but did not arouse suspicion. But only a couple weeks later she suffered her first seizure of her life at 11 years old. It lasted ten minutes, and it marked the beginning of the next chapter of her life. For weeks, Tia was having seizures without knowing why. Twice, she had to be resuscitated. And yet while she suffered, her blood work and many tests continued to come back clean. Doctors were mystified. And recently, things had gone from bad to worse. Now on top of her seizures, Tia was losing functions. She would put food in her mouth, chew once, and then stop. She had forgotten how to eat. She developed twitches in her arms and legs. Things spiraled out of control, and there was still no diagnosis.
It wouldn’t be until over a month later that a doctor came into Tia’s life at exactly the right time. Three years before meeting Tia, he helped a little boy whose story was almost identical to hers. After extensive testing, the doctor was able to diagnose the little boy with an extremely rare disease that had only been named in 2007. If he had not helped this boy prior to meeting to Tia, it is likely she would still be without a diagnosis… almost four years later. But luckily, after reviewing Tia’s charts, he came to a swift conclusion: Anti-NMDA Receptor Encephalitis. This rare autoimmune disease causes the body’s immune system to produce antibodies that attack NMDA receptors in the brain. These receptors control impulses in the brain and are critical for judgement, perception of reality, human interaction, the formation of memories, and the control of autonomic functions such as breathing and swallowing.
It sounds grim, but there is a glimmer of hope: the condition is curable, and more than 85% of people make a recovery. “Tia’s day,” Jennifer says, “is coming soon.”