A three-year-old boy from Liverpool, initially told by doctors he had a viral infection, has been diagnosed with a rare brain condition. Zohan Amin, from Childwall, is now unable to speak, walk, or eat following his diagnosis with Acute Disseminated Encephalomyelitis (ADEM).
Zohan's mother, Rabia Hassan, said her son was born a 'happy, thriving boy' with no health issues. However, after starting nursery last month, he began to get extremely tired. He was sent home unwell, and the family took him to see a GP, who reportedly reassured Rabia it was merely an RSV infection.
Family's growing concern
Rabia, 36, explained that her son was 'just getting very very tired.' She called the GP around October 14, but was told that 'he's had a viral infection, there is nothing that we can do.' She noted that Zohan's excessive sleeping was not picked up as a red flag, and they were sent home.
Two days later, Zohan returned to nursery appearing well, but became poorly again the following day. Rabia recalled that on Saturday, 'his body started shutting down.' He woke up tired, went back to sleep, and later slept through the afternoon without waking. Rabia rang 101 and was told there was a six-hour wait time, but a healthcare assistant called back quickly and arranged for a doctor to ring immediately.
Diagnosis and treatment
Zohan was rushed to Alder Hey, where he was diagnosed with ADEM. According to Great Ormond Street Children's Hospital, ADEM is a rare inflammatory condition affecting the brain and spinal cord, often developing after a minor illness like a common cold. It occurs when the immune system attacks the healthy myelin surrounding nerves.
Zohan was placed into an induced coma for 10 days. Although he has regained consciousness, he no longer recognises his family and has also been diagnosed with Myelin Oligodendrocyte Glycoprotein Antibody-Associated Disease (MOGAD), another rare condition causing inflammation of the brain and spinal cord.
Family's plea for awareness
Rabia said, 'His brain does not remember who his parents are, who his siblings are, who his family is. We have a long road ahead.' She noted that Zohan is immunosuppressant, and his own immunity is attacking his brain and spinal cord. The family does not know how life will be, as consultants and doctors do not tell them exactly what to expect.
A GoFundMe page has been set up, raising more than £5,660 so far. Rabia appealed to the city, saying, 'He's Liverpool born, he's a Liverpool lad and we just want him to be back how he was.' She also urged parents to watch for signs of brain inflammation, using the F.L.A.M.E.S. mnemonic from Encephalitis International, which includes flu-like symptoms, loss of consciousness, acute headache, memory problems, emotional changes, and seizures.
Rabia concluded, 'If they are unresponsive, if they are not waking up from the sleep, don't dismiss it. Rush them to the doctors, make sure that your child is checked thoroughly and the signs are not missed.'
