Harry Potter actress' daughter woke up every day convinced she was on holiday in France

September 14, 2017  11:57

The daughter of a Harry Potter actress has had so many brain surgeries she developed a rare condition - that left her waking up every morning thinking she's on holiday in France.

Tansy Smethurst, whose mum Rakie Ayola plays Hermione Granger in the Harry Potter play , was on holiday across the Channel when she suddenly developed spots on her body and needed to be rushed to hospital.

French medics diagnosed the 13-year-old with a brain cyst rushed her into surgery.

But unfortunately, she suffered a serious infection after surgery which left her memory loss - meaning she woke up every morning thinking she's still on holiday.

The incident happened on Easter Sunday, 2013, and her Harry Potter and the Cursed Child star mum says every day was a struggle to get Tansy to remember where she was.

Rakie, 48, from Greenwich, south east London, said: "Tansy is very well now but from August to December 2013 she had 12 brain surgeries. She was so brave.

"We thought the spots were due to having a dual heritage, I'm black British and Adam is white.

"We never thought it could be a sign of a genetic disorder."

She was left short-term memory loss and diagnosed with the genetic disorder Neurofibromatosis Type 1, which causes benign tumours to develop on nerve endings throughout the body.

The rare disorder effecting one in 3,000 causes low muscle tone, co-ordination problems, and tumours or lumps in the body, and the brave teen needed 12 surgeries in a bid to fight the cysts.

Tansy had discolouration marks on her skin, know as "cafe au lait spots" - French for coffee with milk.

After being referred to Guy's Hospital and discovering Tansy's condition, Rakie said there was an "awful" realisation of what their daughter had upon Googling the name.

"Things started to slot into place after that. At primary school Tansy had been tested for dyslexia, but the results came back that although she didn't have dyslexia, she had some difficulties with comprehension.

"It linked into the learning difficulties that are another potential symptom.

"We had to cope. There are moments, particularly when you least need it such as on the school run with Shani, when someone asks how you are and you burst into tears.

"It hits you unawares in all sorts of ways. I was emotional and angry too.

"I was angry at a lot of people, angry at the nurses, I was constantly apologising and crying too."

Brave Tansy had eleven further surgeries over the following few months, and after each one Tansy came out delirious and her short-term memory disappeared.

Tansy's memory loss meant that back in London she would wake up every day thinking she was still in France and could only remember up until the day on holiday when she became ill.

Rakie said: "It was incredible how she coped with it all. She couldn't even remember her hospital room.

"Once she was up and walking she would go to the bathroom and come back and not recognise her room - even though hers was the one decorated with balloons and the room next door was empty. She had no clue.

"I noticed one time she only identified her room because my coat was there and she remembered my coat.

"Even now, if something new happens she struggles. Routine is very good for her.

"As she gets older it becomes more apparent that she has challenges with cognitive skills.

"She still has some memory issues, for example when we drive to see family in Wales she will ask several times on the journey where we are going.

"She does have more café au lait spots and she has some raised fibromas but there's nothing to be alarmed about."

Tansy has now mostly recovered, with her last scan in autumn last year, where doctors said everything was fine.

Rakie has become a patron of charity Jeans for Genes Day and likes to help parents coping with genetic disorders.

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