A mum fears she won't be able to afford the £17,000 it might cost her in energy bills to keep her disabled daughter alive.
Carolynne Hunter's daughter Freya Hunter, 12, has severe cerebral palsy and needs oxygen for her chronic breathing problems, plus a warm room.
The family's energy bill was previously around £6,500 a year but this could rise to a whopping £17,000 next year.
Carolynne, 49, who lives in Tillicoultry, Clackmannanshire, Scotland with Freya, who is also blind, and her older daughter, described their situation as "unbearable".
Speaking to the BBC, she said: "I've been worrying how to afford to pay for the amount of energy I need for the past seven months.
"The level of care Freya is having is probably on par with what would be happening in an intensive care ward. She needs constant heat and the staff need to be comfortable in the room."
Freya needs support from at least two NHS nurses or staff from self-directed support (SDS), a form of social care.
They monitor the youngster's heart rate and oxygen levels and carry out regular suctioning to keep her airways clear.
The family live in a large council house so there is enough space for Freya's equipment, and Carolynne says to save money they tend to only have heat on in her room.
It means she and her other daughter often stay cold to ensure Freya and her staff are warm.
Carolynne works full-time on a moderate salary, but despite not earning enough to pay her energy bills she does not receive the financial support someone on a low income would.
Clackmannanshire Council Energy Advice Service warned Carolynne earlier this year that if the energy price cap rose by 88% in January, her energy bill could hit £17,700.
This was before the Energy Price Guarantee was announced but it is now set to end in its current universal form April.
This "freezes" energy bills for the typical home at £2,500 a year - although this figure is just illustrative of a typical household.
You could end up still paying more for your gas and electricity, as the cap is on the unit rates you're charged.
The Government says the Energy Price Guarantee will become a targeted scheme from April- but hasn't said who will be helped, or if the £2,500 figure will remain the same.
Chancellor Jeremy Hunt said there would be "difficult decisions" to come on tax and spending - but support for the most vulnerable would be prioritised.
Carolynne hopes that by going public with her family's plight, the Government will consider offering more help to those providing medical support in their homes.
This, she believes, should include prioritising these individuals and families when it comes to providing solar panels and battery storage, especially given the National Grid's warning over power cuts this winter.
She said: "If I don't have power how can I keep Freya alive? How on earth am I supposed to manage a team of staff?
"How are they meant to look after Freya safely if there's not any power? Have I to phone an ambulance every day and take her to hospital?"
Clackmannanshire Council has been approached for comment.
