At first glance, you’d think I was a typical mother, sitting in the circle outside her bungalow chatting away. But if you looked deeper, you’d see more. You’d notice the massive bottle of bug repellent on my lap, how I discreetly wipe away tears of happiness as I watch my daughter play, and the concern in my eyes that I fear will never fade.
I have spent the past few years literally fighting for my daughter’s life. She is now nine years old, but this saga began when she was just two. I write this now in the hope of sparing another family the devastation we’ve been through. I beg you, dear reader, when you finish reading this article, don’t push it into the recesses of your mind. Take action to prevent this from happening to your loved ones, and at the same time, keep your eyes open for the child whose illness may have been missed.
At first glance, you’d think my Sara was like any other girl playing in the bungalow colony. She is, bli ayin hara, an all-around amazing child—kind, compassionate, highly intelligent, with a delightful sense of humor and a positive outlook. She is always thinking of others and is the first one to offer to help. I am so thankful to Hashem that we can once again see these traits, especially because I know many mothers who are still desperate to see their child shine again.
Sara is recovering from post-infectious autoimmune encephalitis (AE). In short, an infection caused her body to attack her brain, prompting a cascade of symptoms that affected her physically, cognitively and emotionally.
It sounds like something out of a science- fiction novel, but unfortunately this happens to too many children (and even adults) in our community. I am a clinician who specializes in working with cognitively and emotionally delayed children, but I couldn’t believe this could happen. I never learned about this in school. I have since spent countless hours immersed in research articles and literature trying to understand this condition. For many, the catalyst might be an infection or virus such as strep, micro-plasma pneumonia, the flu, COVID-19, or a tick-borne illness. For others, we simply don’t know why the body suddenly attacks the brain.
In Sara’s case, her symptoms presented after she had a strep infection, so we originally suspected strep as the original trigger, such as with PANDAS (pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections). However, we have since learned that the root cause was really Bartonella, a tick-borne illness that is a co-infection of Lyme disease. When her immune system was weakened due to fighting strep or the flu, she could no longer fight the Bartonella.