Unfortunately, my family also had a very difficult, almost fatal experience.

Our son, Angelo, was 14 years old when he became very ill. It started in mid-August 2025 with very strong headaches and high fevers. Angelo repeatedly complained about having double vision and a flickering in front of his eyes. His right eye hurt when he moved it. Then his birthday, the 15th of August, came around and everything seemed to get better.
But then, three days later, he came home crying from school. His headaches had gotten so bad that he could barely stand it. He also had a high fever and strong pain in his lower back as well as both his knees. Every touch made him scream out in pain. Two days later, we took him to the hospital. Nothing seemed to help and one treatment followed the next.

At first, no one could tell us what was going on but the symptoms got worse and worse. Overnight, his face changed, he lost control of parts of his body, his speech started slurring and one side of his body became weaker than the other. His condition worsened by the hour. After that, all he could move was his right hand, but only to clutch a stuffed animal while shaking uncontrollably. The next day, we were flown to another hospital by helicopter. At that point, Angelo´s immune system had collapsed and his reflexes were gone. His life was hanging by a thread. For a few days, we didn’t know what was going to happen. Angelo was diagnosed with MOG autoimmune encephalitis.

Around early September, slowly, his condition started to improve; he started breathing on his own again. Later that month he was taken to a children’s station specialised for his condition. When Angelo finally left the hospital, he spent much time in a rehab clinic.

In early December he went back to school for the first time, just for a few hours. A big challenge is climbing stairs which is extremely exhausting for him, but of course, his school has a lot of those. On St. Nicholas´ Day, he had a scary episode that lasted several minutes after which his speech slurred again, he had a tingling sensation and lots of pain in both feet. His balance worsened and he was put on new medication that helped really well. Some health issues he had before this disease are better now but everyday life is still so much different from before.

Today, Angelo is still fighting many of these challenges like the tremors and episodes; both become worse when his body is under too much stress. It seems that the more he tries to get rid of it, the worse it gets. Until today, his wheelchair is a necessary companion for long trips and shopping tours since Angelo´s strength is still compromised. He is able to attend school up to four hours a day with our support. Thankfully, he has a lot of friends who accept him for who he is, so that even tied to his wheelchair, they can have fun and many laughs together. On good days, Angelo is even able to play volleyball.

This story is also published in German. Autoimmun-MOG-Enzephalitis – Angelos Geschichte (deutsche Version) | Encephalitis International

Story published August 2026