Case study

A teenager struck down by a rare brain disease lost all her memories – apart from the recollection of her teddy bear.

Rosie Paley, 19, had no memory of her two young brothers and couldn’t even recognise her mother when she woke up in hospital suffering from encephalitis, which causes the brain to become inflamed.

Sedated after suffering a seizure that caused her to fall down the stairs, Rosie woke to discover her memory had been wiped.

Although it was caused by the herpes simplex virus – the same bug responsible for cold sores and chicken pox – Rosie showed no symptoms prior to the seizure, baffling doctors as to why she fell ill.

Her mother Helen said: “Rosie woke up and looked at me with a blank expression and said: ‘Who are you?’ I was heartbroken and terrified.”

Two years on, Rosie is still piecing together her life, using photographs.

She said: ‘Looking back at pictures I can see I had an amazing childhood. I just wish I had memories to go with the pictures.

“Life is now about making new memories. It’s like I’m starting from the beginning.

“I have had to change every aspect of my life now because I don’t know what I was like before.”

Rosie’s mum commented: “I thought she would never remember me.

“Luckily after a few hours she began to recognise me and even asked for her favourite childhood teddy bear, Baa Lamb, which is still the only thing she remembers.”

The teenager still suffers with short term memory loss and has to write down instructions for her bus journey to work as well as reminders to help her complete everyday tasks.

She said: “It’s really stressful but as long as I have a routine I can handle it all.”

Helen added: “We could look at all the bad things about what’s happened but it wouldn’t solve or change anything.
“I try and encourage Rosie to not rely on technology and just to get in the habit of repeating things until they are really clear for her.

“We have a laugh about it and Rosie just refers to herself as a little bit ditzy rather than someone with a memory problem.”

To help more patients like Rosie, please donate to the Centre for Rare Diseases by clicking the 'donate to this fund' button at the top of this page.

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