A teenager’s memory lost overnight due to a brain-swelling condition that doctors thought was school stress.
Rafaela Domingos, now 17, started behaving strangely at home with her parents, Jorge and Florbela, three years ago. She would sleepwalk and daydream.
Doctors said she had absent seizures – in this condition a person stare blankly for a few seconds – and they thought she had school stress.
Rafaela, of Ashford, Kent, having a seizure at school and she was taken to the hospital after she didn’t recognize her parents.
Tests confirmed she had encephalitis, the condition when the brain becomes swollen.
Rafaela has recovered from her disease, and now she has allowed going home after 10 weeks in the hospital.
Her mother Mrs. Domingos is a teaching assistant and she said: ‘It was every parent’s worst nightmare – she had no memory of me, her dad or even of herself.
‘It was a fear unlike anything I’ve ever known – with her memory loss, it was like we’d lost her.
‘She looked at me blankly, with fear in her eyes – to have your own child looking at you with such terror, to not know you at all, it broke my heart into pieces.
‘And as her condition worsened, the parts of memory she regained stopped and got worse – and she was so terrified she tried to run away.
‘My own daughter was so scared and felt so alone that she had tried to run from the hospital – because she didn’t know her own family.
‘I couldn’t believe what had originally been diagnosed as stress turned into something so surreal and so horrific.’
Mrs. Domingos said she and her husband, noticed something unusual when their daughter began sweating, lost her appetite and developed sleep problems.
She said: ‘We had an idea something was off for a while – Rafaela was struggling to sleep and slept walked.
‘We’d often find her looking into space, almost daydream like which we later learned were absence seizures.
‘But when she had a big seizure at school, doctors said that they wanted to keep her in overnight.’
Mrs. Domingos said: ‘In the aftermath of that, she had asked who I was – and my heart stopped.
‘As a parent, it was the hardest thing I’ve had to witness – her being completely blank at who we were.
‘Even when she regained consciousness, she was struggling to make any sense when she was talking.
‘We tried to keep everything as normal as possible, and I asked her to sign a card for her dad’s birthday.
‘But looking at that, I remember feeling horrified – she wasn’t able to write properly, and it was at that point, five days after she was brought in, that the specialist was contacted as it was obvious something sinister was happening.
‘Her father and I became desperate – she didn’t know us, and it seemed doctors were as clueless as we were.’
She was diagnosed with encephalitis.
Mrs. Domingos said: ‘She [Rafaela] needed catatonic treatment which was an entire plasma change.
‘Her entire blood was filtered, and after undergoing that and radiotherapy, all of sudden her arms were working again.
‘She could smile, she could move but she had no memory of her ordeal or who she was.
‘Even as she recovered, she didn’t know us or even who she was, which was the most heart-breaking thing.’
Rafaela spent two months in hospital and she took 26 tablets a day. Slowly, she ‘came back to life’, her mother said.
Rafaela said: ‘I still have no memory from two months before my diagnosis to two months after. My first memory was a very blurry return home.
‘But I realize how lucky I was. I was diagnosed relatively early, but people can get brain damage for life.
‘I might still need time to process certain things, but now when I hear my parents talk about it, it makes me realize the ordeal they went through.
‘Now I’m almost three years on, and I consider myself in good health. I now focus on my passion, photography, and campaign for early diagnosis to help saves lives.
‘As terrifying as it was to lose my memory, it could have been so much worse and I feel very lucky.’
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