“Without electricity, Isaac would die. It’s no exaggeration. So I have to pay, whatever the cost.”
For Maxine Rothchester, keeping power in her home is literally a matter of life and death.
She has cared for Isaac since he was eight months old. He is now almost nine years old, but his condition means he is of the mental age of a newborn and weighs just 11kg.
Since birth, he has suffered from Allan-Herndon-Dudley Syndrome, an extremely rare condition which means he needs 24/7 care and specialist equipment to keep him alive.
“Like many parents with children who need this equipment, I am terrified,” Maxine told Sky News.
“The equipment we need is not a choice – it’s Isaac’s life.
“He’s got an elevator to go upstairs, we’ve got a bath that goes up and down, we’ve got a profiling bed, he’s on 24/7 oxygen – which is run 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. She depends on Universal Credit and help from the NHS.
His weekly electricity bills have already increased.
“I already noticed that they were changing,” she said.
“We’re probably spending around £30 more a week than we were. I’m not sure how we’re going to cope when it all starts up again. Because the money coming in is going to stay the same (but) the money that will come out will be much higher.”
Maxine added: “Yes, we get a Disability Living Allowance, but it’s supposed to be there to cover things for Isaac like play equipment. It’s not to pay household bills, what will eventually happen.”
Maxine said she had “nothing more to cut back on”.
She continued: “I have dogs, but I’m not going to get rid of them because it’s my sanity.
“I don’t see any other way to save money. I’ll just have to pay for it. I’ll just have to find it somehow. Probably reduce my own food.”
Maxine said she wanted the government to provide clear and specific details on the additional help that will be offered to those struggling to pay their mounting bills.
“Having a plan ahead of the next big spike would be a really good thing to help us stop worrying,” she said.
As we leave Maxine and Isaac, her parting words are a stark example of how difficult it is for some to raise bills: “I’m not asking for much, I’m just asking for help to keep my baby boy in life.”