For Maxine Rothchester, maintaining power in her home is literally a matter of life and death. She had been taking care of Isaac since he was eight months old. He is now nearly nine, but his condition means he has the mental age of a newborn and weighs just 11kg. Image: Isaac has Allan-Herndon-Dudley syndrome 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. “I, like many parents with children who need this equipment, am horrified,” Maxine told Sky News. “The equipment we need isn’t a choice – it’s life for Isaac. “He has an elevator to go up, we have a bathroom that goes up and down, we have a profile bed, he’s on oxygen 24/7 – powered by a machine. Every aspect of his life is controlled by electricity.” As Isaac’s full-time carer, Maxine cannot work elsewhere to supplement her income. It relies on Universal Credit and NHS help. Her weekly electricity bills have already increased. “I’ve noticed they’re already changing,” he said. “We’re probably spending about £30 a week more than we were. I don’t know exactly how we’re going to cope when it all goes up again. Because the money coming in will stay the same (but) The money going out will be a lot more.” Image: Isaac needs specialized equipment to keep him alive Maxine added: “Yes, we get Disability Living Allowance, but that’s supposed to cover things for Isaac like play equipment. It’s not meant to pay the household bills, which is what it will end up doing.” Maxine said she had “nothing else to reduce”. He continued: “I have dogs, but I’m not going to get rid of my dogs, because that’s my logic. “I can’t think of any other way to save money. I’ll just have to pay it. I’ll just have to find it somehow. I’ll probably cut back on my food.” Image: Maxine relies on Universal Credit and NHS help Maxine said she wants the government to outline clear and precise details of what extra help will be offered to those struggling to pay their mounting bills. “Having a plan before the next big spike would be great to stop worrying even more,” he said. As we leave Maxine and Isaac, her parting words are a prime example of how difficult mounting bills can be for some: “I’m not asking for much, I’m just asking for help with strength to keep my baby boy alive.”
