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Page last updated at 14:08 GMT, Tuesday, 21 September 2010 15:08 UK
Alexander Devine charity plans to cover west Berkshire
by Emma Midgley
BBC Berkshire Reporter

Alexander Devine
Alexander Devine was diagnosed with cancer aged four

A woman who set up a children's hospice charity after losing her son to cancer is in talks with a hospital to provide care across west Berkshire.

The Alexander Devine Children's Hospice Service was set up by the Devine family after their son died from cancer.

The charity provides care to children in east Berkshire, and plans to raise enough funds to build a local children's hospice.

It is also hoping to provide palliative care for children in west Berkshire.

Founder Fiona Devine said in the past year the charity had begun to offer palliative care to parents of 20 terminally ill children in east Berkshire.

Now she hopes to find another nurse who can help west Berkshire families.

Familiar face

Mrs Devine has first hand experience of nursing a terminally ill child.

Her son Alexander was diagnosed with a brain tumour aged four, and died when he was eight-years-old.

She said: "When Alexander was ill we had a fantastic team from our local hospital but they offered a very stretched service.

"We knew that what would be of benefit to Alexander and other children like him, would be continuity of care, a constant face from diagnosis right through to the end of life care."

That familiar face is now Alexander Devine nurse Lucy Jones, who visits ten children in East Berkshire on a weekly or fortnightly basis and sees ten others around once a month.

Lucy Jones and Michael Parkinson
Michael Parkinson is a supporter of the charity

The charity is currently in talks with The Royal Berkshire Hospital to provide a similar palliative care service in west Berkshire with a second nurse.

Michelle Ennis from Bracknell is one of the parents who has been helped by the charity.

Her son was born with a narrowing of the airways which meant a tracheostomy had to be performed on him when he was 11-days-old.

As a result, her son Joseph has needed 24-hour care his whole life.

Invaluable service

Mrs Ennis said: "The tracheostomy could block at any time and stop him breathing. If it wasn't changed within a couple of minutes he could die.

"With the tracheostomy he has no sound at all, so you couldn't tell he was crying unless you were looking at him."

"The NHS were unfortunately unable to provide care for Joseph, we never had any care until the Alexander Devine charity said they could provide Lucy."

Michelle said the care she had been given by the Alexander Devine nurse, Lucy Jones had been "invaluable" to her family and they didn't know what they would have done without her.

She said: "She visits us for a few hours, and it just gives me a chance to do some normal day to day things, like washing up, having a sleep, having a bath, washing my hair."

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