A carer mum has admitted she will have to go hungry in order to pay for electrical equipment needed to keep her unwell son alive.
Maxine Rothchester's disabled son Isaac, 9, has a rare condition called Allan-Herndon-Dudley syndrome which requires round the clock care and specialist equipment to keep him alive.
The carer, who has looked after Isaac since he was eight months old, said Isaac weighs just 11kg and his condition means he has the mental age of a newborn.
Along with hundreds of other parents with children who need life-saving equipment, Maxine admits she is terrified if she's unable to afford Isaac's specialist machine.
She told Sky News : "He has a lift to get upstairs, we have a bath that goes up and down, we have a profiling bed, he's on oxygen 24/7 - that's run by a machine.
"Every aspect of his life is controlled by electricity."
Maxine added having the equipment on is not a choice - it is life for death little Isaac - as she struggles to reduce any more bills.
The carer receives help from Universal Credit and the NHS, but her electricity bills continue to increase.
She said: "We're probably spending about £30 a week more than we were.
"I don't quite know how we are going to cope when it all goes up again.
"Because the money coming in is going to stay the same [but] the money going out is going to be a lot more."
And whilst she is in receipt of disability living allowance, Maxine said that money is meant for play equipment - and not household electricity bills.
With nothing else to cut back on, it means Maxine will be left to cut back on food in order to help fund Isaac's specialist equipment.
She admitted: "I've got dogs, but I'm not going to get rid of my dogs, because that's my sanity.
"I cannot think of any other way to save money. I'll just have to pay it. I'll just have to find it somehow. Probably cut back on my own food."
Maxine is demanding the government make clear what kind of support they will offer carers who are struggling to pay their electricity bills.
She said: "I'm not asking for much, I'm just asking for help with power to keep my little boy alive."
The desperate mum launched a GoFundMe earlier this year to help get Isaac a new wheelchair buggy - it beat its target of £17,000, raising a total of almost £40,000.
