Family struggling to pay electricity bill for equipment keeping there daughter alive
A mum and dad fear they could lose their little girl because they cannot afford the electricity bill to keep her breathing.
Maddison Sherwood, from Loughborough, was born with Spinal Muscular Atrophy distress type 1 and doctors warned she would not make it to her second birthday.
However, brave Maddison has defied all medical expectations and is due to celebrate her ninth birthday tomorrow (SUNDAY).
Her condition means Maddison cannot breathe unaided and she has been using a ventilator since she was nine months old.
But her family have been plunged into debt with energy provider E.ON after their monthly bill rocketed.
Her parents, who provide her round the clock care, are struggling to make ends meet and keep her life-saving equipment running.
Lidia and Jamie Sherwood, 33, say they currently face £150 worth of debt and claim they were given the wrong type of electricity metre.
Mum Lidia, 31, said: “It’s incredibly stressful worrying about the energy bills, especially when looking after Maddison as well.
“It really is a matter of life and death for us.
“We previously paid a set amount of £163 a month and we just managed to get by, but it’s now gone up to £230 and we can’t afford it.
“We have had to apply to charities in the past for help with bills as her dad and I had to give up work to become her full-time carers.
“The equipment is so expensive, especially with us both being out of work. Her dad had been working since he was 15 before. We don’t have money for anything else.
“We were given a key metre which they are not supposed to do that with vulnerable children in case we can’t put electric on the key.
“What we really want is a special tarriff for families with people on ventilators. It’s not just us who are struggling.
“With medical advances more and more people are able to live at home with ventilators. It’s fantastic, but the energy companies need to move with the times and realise this is happening.
“It’s not enough to be put through to a help line where they try and give you tips on using less energy. Not having devices switched on is not an option for us.”
Maddison was diagnosed with Spinal Muscular Atrophy distress type 1 when she was just six months old. She was suffering with a cold which her body was not fighting and was rushed to intensive care at Queen’s Medical Centre in Nottingham.
She was in the hospital for 11 months, during which time her parents underwent training to be able to look after her at home.
Maddison, the youngest of four siblings Lacey, 15, Harley, 12, Jaden, 10, was eventually discharged in January 2010.
Jamie quit his job as a builder to help Lidia care for her and the family have since survived on £200 a month disability living allowance and around £150 a month carers’ allowance.
Lidia said: “When she was born she was so happy and interactive. The diagnosis came as a real shock. I guess you could describe it as bittersweet, because we knew something was wrong but we really were not expecting it.
“It’s an extremely rare condition and there were only 60 known cases when Maddison was born.
“Eventually we were given a choice – turn off the ventilator or let her have a tracheostomy and train for seven months to look after her at home.
“We took the best option to keep her alive and promised her the best care at home.
“But we were still devastated and went through a grieving process. We were told she would be paralysed and would not be able to eat, swallow or talk, and they expected her to pass away before her second birthday.”
Maddison’s condition means she has low muscle tone, has 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.
Her parents have to constantly monitor her vital signs, do stretches and strengthening exercises with her every day and use a cough machine three times a day to help clear her airways.
Her ventilator, bed and bath are powered by electricity. She also has to be careful around people with coughs or colds, which can be extremely dangerous as the muscles she uses to cough are paralysed.
However, Maddison tries not to let her condition get her down. She attends a mainstream primary school, is part of a theatre group and plays wheelchair football.
Maddison also enjoys singing and even caught the attention of pop group Little Mix who shared the youngster’s karaoke video. It racked up more than 70,000 views on Facebook.
Lidia said: “She really is remarkable and such an inspiration.
“She is good at just getting on with life and enjoying what she is doing. She’s extremely confident.
“Every once in a while she will get down about it, and as she gets older I think she realises more and more that it is tough, but she always bounces right back.”
The family is raising awareness of Maddison’s condition via Facebook: https://www.facebook.com/SMARD.maddison/
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