Electricity standing order to rise to £147 (From The Northern Echo)

Electricity standing order to rise to £147

8:31am Thursday 15th October 2009 in

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Family’s plea for help as firm doubles charge.

THE parents of a boy dependent on sophisticated equipment to keep him alive are unable to pay their spiralling electricity bills.

Doctors predicted that Liam Barker, who is about to turn 16, would not live to see his third birthday, but he is now believed to be the UK’s oldest myotubular myopathy sufferer.

He has been on life support since birth and relies on two ventilators 24 hours a day to fight the terminal musclewasting disease.

Philip and Michelle Barker say they are saving Middlesbrough Primary Care Trust (PCT) hundreds of thousands of pounds a year by caring for their son at home and that they should be entitled to a grant to help pay for his machinery running costs.

They said their monthly electricity standing order will rise from £68 to £147, which they are unable to pay.

Mr Barker, 49, said they were asking for a contribution of about £80 per month.

However, the trust said it was unable to help, while electricity supplier npower said the family was on its lowest tariff possible.

Mrs Barker, 41, said: “Without this vital equipment, he will die, but the bills are crippling us.

“We fight to keep him here and he fights to stay with us.

He is our miracle.”

The rare muscle condition affects one in ten million children, most of whom do not survive beyond their first birthday.

Liam is unable to walk, talk or use his arms, and communicates by blinking his eyes.

Mr and Mrs Barker, who share their home in Linthorpe, Middlesbrough, with Liam and nine-year-old daughter Britney, have won the support of the Myotubular Trust charity and Middlesbrough MP Sir Stuart Bell.

Hilary Hall, from Middlesbrough PCT, said: “After receiving this request, it was quickly established that this fell outside of the NHS remit, and the PCT was unable to help in terms of financial assistance.”

An npower spokeswoman said: “We have previously offered our help by clearing the debt on their energy bills and also putting them on our very lowest tariff in a bid to keep their bills as low as possible.”