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'It really is a matter of life and death for us': Parents say they cannot afford rocketing electricity bills for the ventilator which keeps their nine-year-old daughter alive

The family of an eight-year-old girl with a rare disease are struggling to pay their electricity bill due to the cost of the equipment needed to keep her alive.
Maddison Sherwood's parents Lidia, 31, and Jamie Sherwood, 33, say they are running into debt with their power provider after their monthly bill rocketed.
Maddison was born with a rare muscle and respiratory condition, called Spinal muscular atrophy with respiratory distress type 1 (SNARD1).
Her condition means she has low muscle tone, poor swallowing abilities and can't breath unaided.
She uses a tracheostomy tube to breathe, relies on a wheelchair, and has round-the-clock care from her parents.
She has also used a ventilator since she was nine-months-old to help her breathe, plus her bed and bath are powered by electricity.

Doctors warned the family she may die before her second birthday, but the brave eight-year-old, from East Leake, has been called a “phenomenon” by her mother, as she is set to reach her ninth birthday on Sunday.
Her parents say they are now running into debt with their power provider E.on after their bills increased from £163 to £230 a month recently.
Mrs Sherwood told the Nottingham Post : “I can’t say it is high what E.on are charging because we do use a lot of electricity but there seems to be no specialised tariffs. We can’t cut back on that bill. We can’t turn the ventilator off for an hour. It is not possible.
“We can’t afford to do anything – we have to pay all this money to make her breathe.
"We rely entirely on the Government because it is a full time job to look after Maddison.
“I also have four kids and she is the youngest.

"It is worrying and the debt is getting bigger. I don’t like going into debt but it is a life or death situation.”
Maddison, who enjoys singing, even caught the attention of pop group Little Mix who shared the youngster’s karaoke video, which racked up more than 70,000 views on Facebook.
Her parents are currently fund-raising to provide their daughter with a holiday of a life-time to Disneyland.
But after Jamie quit his job as a builder to support his daughter, the family say they are now living on £200 a month disability living allowance and around £150 a month carers’ allowance.

The family says they are in talks with E.on to see what can be done.
A spokeswoman for E.on said: “We are in touch with Mrs Sherwood regarding this matter.
"As with all our customers, we recommend that anyone who has concerns with their bills gets in touch as there are many ways we can help.”

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