Help Ben (29) Fight Anti-NMDAR Encephalitis

My son-in-law, Ben, was admitted to the hospital on September 30th 2024, and has since been diagnosed with Anti-NMDAR Encephalitis, a rare autoimmune condition that affects just 1 in 1.5 million people.

Anti-NMDAR Encephalitis occurs when harmful antibodies attack the brain, causing severe inflammation. About half of the cases are linked to tumors, which trigger this dangerous immune response.

Until mid-September 2024, Ben was a healthy and active young man. But then, his symptoms began: night terrors, panic attacks, chronic headaches, sleep deprivation, and loss of appetite. These quickly escalated to seizures, hallucinations, psychosis, catatonia, hyperventilation, and heart rate variability.

Anti-NMDAR Encephalitis is notoriously difficult to diagnose. Ben was admitted to A&E three times before a severe seizure sent his heart rate above 180 bpm. He was rushed to Resuscitation, where doctors used electrical cardioversion (shocks) to stabilize him. Ben has been in the hospital ever since, and his condition has worsened to the point where he is now in the Intensive Care Unit at King’s College Hospital in a catatonic state.

Despite receiving various treatments, including steroids, intravenous immunoglobulin, Rituximab, and two rounds of plasmapheresis, Ben has not yet shown improvement. His blood tests have also revealed an antibody associated with tumors, but CT, MRI, X-ray, and PET scans have not identified any tumors so far.

Throughout this difficult time, Ben’s partner, Liam, has been by his side, visiting him daily. However, Liam’s daily commute from Folkestone to London for hospital visits is expensive, and the uncertainty of Ben’s recovery means these travel and accommodation costs are likely to continue for some time.

We are raising funds to help cover these travel expenses and provide Liam with some relief during this incredibly challenging time. If you can, please consider donating. We also understand that this is a tough time of year, so even sharing this page can help spread awareness about Anti-NMDAR Encephalitis, a little-known but life-threatening condition that can strike anyone, at any age.

Thank you for your support, whether through a donation, a share, or simply your thoughts and prayers.