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Devastated dad told daydreamer daughter, 4, has ‘rare childhood dementia’

A four-year-old little girl has been diagnosed with a rare and fatal disease likened to 'childhood dementia'.

Adelei Clarke was clumsy and regularly seemed to be daydreaming.

But she actually had symptoms of Batten's disease and had her first seizure in May this year.

Her dad, David, 35 and mum, Hayley, 36, were devastated to find out she could die before she sees her 10th birthday.

The rare disease could also cause her to lose her sight, and she may forget who her parents are by the end of the year.

Her father, a youth worker, told the Mail Online : "When Addy's symptoms first started, we just thought she was daydreaming. The lights would be on but nobody was home.

"She'd fall over and we wouldn't think anything of it beyond "she's clumsy".

"She didn't learn to talk at a normal rate so we took her to a speech therapist. They just said she was one of those kids who wouldn't stop talking once she grew up,

"But there would be times when other people would say tings – the first time we really considered the possibility that something could be wrong was when her grandparents said she looked unusually vacant.

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"Then she had her first seizure in May. There was a point where she didn't take a breath of air for 30 seconds until I remembered my first aid training and gave her the Heimlich maneuver.

"Thankfully she expelled some of the fluid and took a big gasper of air, it was just as the paramedics walked through the door".

The four-year-old was rushed to Great Western Hospital in Swindon following another seizure on the M4 over the summer.

She was then blue-lighted to the John Radcliffe Hospital in Oxford, where she spent days and had 17 seizures a day.

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An MRI scan showed her brain was underdeveloped, and a paediatrician told David was terminally ill.

He said: 'When I got there, the first thing he said to me were the words: "I'm very sorry". That was like a punch to the gut. 

'I knew Addy was terminally ill just from the tone of his voice. He said: "I hate to be the one to tell you, but your child has Battens". 

'I had no clue what Batten was but I could tell it was horrific, so he filled me in.

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Doctors from Great Ormond Street Hospital told the family that Addy would lose her memory and go blind in the next few years, and that she'd be in a vegetative state by age seven and likely dead by the age of 10.

David said: "Ever since she was born, my only dream was to walk her down the aisle. I didn't care about her being a doctor or a lawyer, I just wanted her to be happy and healthy."

Battens only affects around 40 children in the UK.

The family have set up a fundraising page to help pay for travelling costs between Swindon and London for Adelei's treatment.

They also want to move into a bungalow to free up more funds as both David and Hayley, a photographer, may have to give up work to become full-time carers in the future.

To donate to the GoFundMe page, click here.

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