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Girl, 5, with rare childhood dementia suffers 187 seizures in a day
['Mel King', 'Fayemayern']
Essex Live - frontpage
Girl, 5, with rare childhood dementia suffers 187 seizures in a dayHer condition currently has no cureView 8 Images (Image: SWNS)A little girl who has up to nearly 200 seizures a day is battling with a rare form of childhood dementia.
He explained that ultimately, without treatment, life expectancy is between five and eight years old."
View 8 Images (Image: SWNS)Holly was diagnosed with CLN2 Battens Disease, a type of childhood dementia, on March 26, 2024.
View 8 Images (Image: SWNS)It cited the drug's high price of more than £500,000 a year per child and limited evidence of long-term effectiveness.
Sadly for Holly, her seizures seem to be getting worse and has set a 'heart-breaking' record of 187 a day.