It truly has been a long haul, with positive news only to be followed by setbacks. I’m sure you know very well that you have the support of all members here – over 50,000 views and well over 200 replies will be some consolation that you and your brother are not forgotten.


Your latest post is poignant, and you do find the right words to convey your feelings. It is hard for many people to express their thoughts in such circumstances. I believe all members reading this thread truly sympathise with your situation. You are coping better than others might do, thanks to your character, and supportive loved ones like your son and partner.


I’m sure part of the problem here is understanding your brother’s condition, let alone wondering why such a rare illness should have affected him. There are many causes for encephalitis ( inflammation of the brain ) but for most patients the cause is unknown. Indeed even with extensive tests, the proportion of cases with unknown cause is higher than any one identified cause. Because it’s rare, there are few good quality studies around the world. The particular type of encephalitis diagnosed in your brother’s case ( Acute Demyelinating Encephalomyelitis or ADEM, where there are immune abnormalities triggered by a number of viruses ) probably accounts for about a fifth of patients. More viruses keep being discovered which might cause ADEM.


As you say, you are grateful that your brother is still alive. Please be comforted with the thought that this very serious illness was diagnosed as early as possible with appropriate treatment – even if imperfect – meaning that you should stay optimistic about his future. You have our continuing support .