Parents of world's youngest locked-in syndrome sufferer, nine, reveal heartache over daughter who blinks to communicate
Eve, 9, suffered a brain bleed in February 2011, which left her with locked-in syndrome
Eve's parents say Tony Nicklinson's story had raised awareness of the condition

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UPDATED:

16:14 GMT, 27 August 2012

Just 18 months ago Eve Anderson was a lively, active schoolgirl. But in February 2011 she suffered a brain bleed caused by an undetected tumour.

Although she battled back from the brink she was left paralysed and today, aged just nine, she is the world's youngest locked-in syndrome sufferer. This means she understands everything that is going on around her but can barely move in response.

Now her parents are speaking out about her condition, following the death of fellow locked-in sufferer Tony Nicklinson, whose High Court battle sparked a public debate about assisted suicide.

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Stepfather Peter and mother Lee with daughter Eve

Hoping for the best: Stepfather Peter and mother Lee with daughter Eve, who fell ill suddenly in February 2011.

Eve with sister Mia in August 2010 before she got sick

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 Mia and Eve in March 2012

Eve (left) with her younger sister in August 2010 before she suffered a brain bleed and pictured together in March this year (right)

Eve's stepfather, Peter Miller, 32,
said: 'Tony's story has really helped raise awareness of it. As a family
we feel very alone and that there are not many people out there who
understand what we're going through.'

Eve, who once loved Brownies and Irish dancing, can now do nothing for herself. Her parents must give her medication and feed her through a tube in her stomach several times a day.

The youngster from Ashington, Northumberland, was rushed to Wansbeck Hospital after collapsing at home. The day before she had developed a rash on her neck and complained of pain behind one eye.

She was transferred to Newcastle's Royal Victoria Infirmary where a scan revealed Eve had suffered a major brain bleed. Surgeons operated to relieve some of the pressure on her skull and later told her parents they hadn't expected her to survive for more than four days.

But Eve did battle on and three months later she opened her eyes. However, she now couldn't move so speech therapists taught her how to communicate by blinking.

Her mother Lee, 34, said: 'It was extremely emotional to realise she was trying to answer a question. It took her up to 60 seconds to blink to say yes.'

Lee and Peter with Mia (centre), Jed (right) and Eve (left) in February 2010 a year before Eve was rushed to hospital

Lee and Peter with Mia (centre), Jed (right) and Eve (left) in February 2010 a year before Eve was rushed to hospital

Eve and Jed

Eve in hospital last year

Eve, pictured with brother Jed during last Christmas (left) still has a cheeky personality since suffering locked-in syndrome (right), according to her step-father

Doctors then found the brain
tumour that had caused the bleed and in August 2011, Eve went through a
six-week course of radiotherapy.

Since
then Eve has continued to improve slowly and was discharged last
November. She can now smile or grimace to express her emotions.

Mr
Miller told The People: 'She can stick her tongue out if she wants a
drink and when you brush her teeth she spits the toothpaste out.'

However,
he added: 'We just have to try and guess what she wants. It is more
emotion that we get from her and we have learned to read her facial
expressions.'

He said Eve still had a cheeky personality, smiling whenever her younger siblings Jed, 3, and Mia, 7, are naughty.

Eve swimming last year. She undergoes multiple therapies to help strengthen her limbs

Eve swimming last year. She undergoes multiple therapies to help strengthen her limbs

Eve loved Brownies and Irish dancing

Eve loved Brownies and Irish dancing before she fell ill

Tony Nicklinson, suffered a massive stroke in 2005, which left him with locked-in syndrome

Tony Nicklinson, suffered a massive stroke in 2005, which left him with locked-in syndrome. He wanted to have an assisted-suicide in the UK

Although her parents hold on to the
hope that she will one day get better they know there is no guarantee
that this will happen. They have adapted their home to give it
wheelchair access and Eve receives physiotherapy and speech and language
therapy amongst other treatments.

She is signed up to go to a new primary school for children with special needs.

Lee
and Peter are now busy raising 25,000 to pay for sensory equipment and
hydrotherapy sessions to improve Eve's quality of life.

'At present, Eve has a poor quality of life and however hard we try, it
never seems like she has much to look forward to on a day to day basis,' they wrote on their JustGiving charity page.

'Any kind of help to be able to buy Eve something to make her life worth living would mean the world to us.'

Some locked-in sufferers have improved over time. Martin Pistorious from South Africa, developed the condition following a mystery illness. However, he started to improve in his teens and communicated via a computer. Now 37, he now has the strength to push a vacuum cleaner and is married and living in Harlow, Essex.

Locked-in syndrome victim, Tony Nicklinson, passed away aged 58 last week after refusing any more food. He had been unable to move since suffering a stroke seven years ago. He had described his life as 'intolerable' and recently lost a court battle to allow doctors to end his life without facing punishment.

While Lee and Peter hope Eve will never ask for assisted suicide they believe Mr Nicklinson should have been allowed to have his life ended.

Mr Miller said, referring to Eve: 'For now we still hold on to hope she will get better.'

To donate to Eve's fund visit www.justgiving.com/allforeve

VIDEO: 'Eve's Army' have produced a fundraising song for Eve. To help click here

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