Our Story

Bearable Books was founded after our son Shiv was diagnosed with a brain injury in January 2020.

Acute necrotising encephalopathy (ANE) is a rare disease characterised by brain damage (encephalopathy) that usually follows an acute febrile disease, mostly viral infections - for Shiv - this was simply influenza. Most of the reported cases are from previously healthy Japanese and Taiwanese children, but it is now known that the disease may affect anybody in the world. The symptoms of the viral infection (fever, respiratory infection and gastroenteritis, among others) are followed by seizures, disturbance of consciousness that may rapidly progress to a coma, liver problems, and neurological deficits. 

Approximately, two-thirds of individuals with acute necrotising encephalopathy type 1 do not survive their illness and subsequent neurological decline. Of those who do survive, about half have permanent brain damage due to tissue necrosis, resulting in impairments in walking, speech, and other basis functions. 

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When Zachhy Got Sick was written shortly after we were discharged from hospital after our two and a half month stay. I could see that our elder son was struggling with, an almost sudden, colossal shift in our parental responsibilities as well as, unfortunately, attention towards him. 

My hope is that you smile, maybe cry a little and hug your loved ones that little bit tighter after you read our story - with hopefully, more to come. 

With love, Meera and my boys