“If there’s no electricity, Isaac will die. That’s no exaggeration. So I have to pay, no matter the price.”
For Maxine Rothchester, keeping the power in her home on was a matter of life and death.
She has taken care of Isaac since he was eight months old. He is almost nine years old now, but his condition means he has the mental age of a newborn and weighs only 11kg.
Since birth, he has suffered from Allan-Herndon-Dudley syndrome, an extremely rare condition that means he needs 24/7 care and specialized equipment to keep him alive.
Maxine told Sky News: ‘I, like many parents whose children need this device, are terrified.
“The equipment we needed was not an option – it was life for Isaac.
“He has an elevator to go upstairs, we have a bath tub, we have a shape bed, he gets oxygen 24/7 – it’s powered by a machine. Every aspect of his life. his are all electrically controlled.”
As Isaac’s full-time carer, Maxine was unable to work elsewhere to increase her income. She is dependent on Common Credit and help from the NHS.
Her weekly electricity bill has already gone up.
“I’ve noticed they’ve changed,” she said.
“We’re probably spending about £30 more a week than we are. I don’t quite know how we’ll cope when things go up again. Because the money coming in won’t change (but)) money going out will be more.”
Maxine added: “Yes, we do get a disability living allowance, but that money has to be there to cover things for Isaac like play equipment. It’s not meant to pay for the bills. single family, that’s what happens in the end.”
Maxine said she has “nothing left to cut”.
She continued: “I do have dogs, but I won’t chase my dogs, because that’s my sanity.
“I can’t think of any other way to save money. I’ll just have to pay it. I’ll have to find it somehow. Maybe I have to cut down on my food intake.”
Maxine said she wants the government to outline clear and precise details about what additional help will be provided to people who are having a hard time paying their rising bills.
“Having a plan before the next big increase would be a really good thing to help us stop worrying further,” she said.
As we move away from Maxine and Isaac, her parting words are a stark example of how difficult raising the bill can be for some people: “I’m not asking for much, I’m just asking for approval. help on power to keep my boy alive.”