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Monday, September 20, 1999 Published at 06:13 GMT 07:13 UK


UK

'Locked in' teenager finds voice on Net

The Internet is Hero Joy Nightingale's window on the world

A teenager born with a neurological disorder that prevents her from talking or walking has found a new lease of life on the Internet.

Hero Joy Nightingale, 13, from Canterbury, Kent, is trapped in her own body but she is able to tell the whole world what she thinks after starting her own Internet magazine.

She has only produced five issues but already has an audience in 77 countries and has managed to attract guest writers such as UN Secretary General Kofi Annan, the Archbishop of Canterbury Dr George Carey and feminist author Margaret Atwood.

The latest issue of the magazine, poignantly entitled From The Window, contains an article by Britain's first astronaut Helen Sharman.

Unknown disorder

Hero was born with what doctors call a "locked-in condition" which is marked by an inability to perform complex muscular movements.

She has abnormally low muscle tone and an undiagnosed neurological disorder.


[ image: Hero has had some very famous guest writers on her Website]
Hero has had some very famous guest writers on her Website
Hero cannot speak, walk or care for herself and her body is in perpetual, uncontrollable motion.

Her mother, Pauline Reid, describes her as "being full of left-over babyish reflexes".

From the Window began two years ago as a way for Hero to meet people outside of Canterbury and give her a distraction from her disability.

It has evolved into an award-winning project and has opened new doors.

She has been invited to Mr Annan's office at UN headquarters in New York and has travelled to Australia to pick up an award for her Website.

'Opened the world'

Wendy Clarke, head of occupational therapy at East Kent Health Authority, says: "I can't find the superlative to describe it."

Ms Clarke, who has worked with Hero since she was two, says: "It has opened up the world to her."

Because of her erratic muscle movements Hero's arm needs supporting as she scribbles notes for the magazine.

These are then transcribed by her mother and transferred to the Website. It is a slow process.

But Hero, communicating through her mother, says: "Writing is everything. Without writing I am nothing because everything I feel, think and need must be conveyed through my spelling."

Writers sought on Web

Hero, who has not been able to attend school since the age of six, spends most of the day in a book-lined study at her home, working on her computer.

She seeks out potential essayists on the Web, sifts through contributions and puts down her own thoughts.

Hero, who also enjoys composing music, hopes to encourage new poet laureate Andrew Motion, writer John Mortimer and tennis star Tim Henman to contribute to From The Window.

She says: "It's very difficult for me to explain or even understand why some small percentage of my targets respond and an even smaller percentage respond with an article. But it's very nice when it happens."





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