NINE-YEAR-OLD Hermione de Nocker is a “pocket rocket” who loves dancing and has just completed her latest Brownie badge.
But the youngster has a rare brain disorder that will leave her with dementia and in a wheelchair in her teens.
Nine-year-old Hermione de Nocker has a rare brain disorder[/caption]
In a bid to save her own life, as well as around 800 other sufferers worldwide, Hermione has set up charity Hope for Hermione[/caption]
In a bid to save her own life, as well as around 800 other sufferers worldwide, she has set up Hope for Hermione, which earned her the Brownie award for charity.
Hermione said: “I want to help other people like me to have a better life.”
Her vital cause aims to raise money so London’s Great Ormond Street Hospital can keep researching a cure for Beta-propeller protein-associated neurodegeneration, which is a genetic mutation.
Mum Caryn, 46, a special needs teaching assistant who lives in Maidstone, Kent, with Hermione, IT boss husband Rory, 45, and son Declan, 14, told The Sun on Sunday: “Hermione is very proud of what she has achieved.
“She is playing a huge part in her own charity organisation, doing fundraising challenges using skills she will lose in the future.
Trial funding
“She is doing a sponsored swim, dance, baking and talking challenge to raise money for Hope for Hermione.
“Everybody who knows Hermione describes her as a pocket rocket. Getting her badge for setting up her own charity has been an absolute dream come true for her.”
Hermione was diagnosed with epilepsy following a seizure at 17 months, then her speech appeared delayed and her parents were told she had autism.
In May last year, they got the BPAN diagnosis.
Caryn said: “We were told that, essentially, toxic iron proteins are deposited into her brain with devastating effects.
“They said that by the time she is a teenager it will appear like Parkinson’s.”
But Hope for Hermione (hopeforhermione.com) will help fund a trial by Professor Manju Kurian at UCL Great Ormond Street Institute of Child Health.
Caryn says: “Although we have received the worst news, we have the ability to have some- thing good come out of the tears.”
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The Brownie is fundraising to help find a cure[/caption]
Brave Hermione with her parents Caryn and Rory[/caption]
Hermione as a baby[/caption]
