Samantha Tolmie, from Doncaster, has given up eating hot meals in order to fund the energy costs of keeping her 22-year-old son Lewis alive.
Lewis depends on a ventilator, humidifiers, suction machines and oxygen concentrators to survive, after falling seriously ill as a toddler.
The equipment has pushed Samantha’s monthly energy bills from around £100 to at least £400, leaving her with almost no room to cut costs elsewhere.
At one point, her energy company suggested she double her direct debit to £845 per month, a figure she described as more than her rent.
“I was terrified. That’s more than my rent,” she said.
To manage, Samantha turns off lights throughout her home and limits herself to one meal a day, consisting of Marmite sandwiches and fruit.
Sometimes, she says, Lewis’s nurses “feel sorry for me, so they’ll bring me hot food.”
“I forget that it’s not normal for someone not to cook food or to sit without the lights on because it saves energy,” Samantha says.
She says she is unable to work because Lewis requires 24-hour care, and despite receiving some support from City of Doncaster Council, the government and charities, the money does not cover all of her expenses.
“I feel shame that I have to claim benefits from the government, because I’ve worked hard all my life and now I can’t,” she said.
Samantha’s situation is far from unique, with charities across Yorkshire reporting a sharp rise in parents and carers skipping meals to meet essential costs.
Disability charity Scope estimates disabled households need an extra £1,095 each month on average to cover their costs.
While Personal Independence Payment supports 3.7 million people across the UK, the average payment of £465 a month leaves a £630 shortfall against that figure.
York-based charity Family Fund, which provides grants for essential household items for families with disabled children and young people, says demand doubled to nearly 300,000 requests last year but can no longer be met without further funding.
In its Cost of Caring report, more than half of surveyed parents and carers said they were skipping meals to afford household bills, with 44% saying their benefits did not cover essential costs.
Lizzie Shelmerdine, Family Fund’s head of research and evaluation, described the rising figures as “really, really worrying.”
“Families are having to choose between things like heating their homes or the parents having dinner just so that they can afford to run their households,” she said.
The charity estimates there are 745,300 families across the UK who are eligible for their grants.
Martin House Children’s Hospice in Wetherby, which provides palliative care and respite for children and young people with serious illnesses, has also witnessed the financial hardship facing families directly.
Vicki Greensmith, director of clinical services, said the hospice recently supported a family who could not afford a headstone for their son and faced losing their housing after his death.
“These are the types of decisions families are making and it’s incredibly stark and increasingly common for us to hear those types of things,” Greensmith said.
Angie Fenn, head of information and advice at charity Contact, which runs a helpline for parents and carers of disabled children up to the age of 25, urged families to check what benefits they are entitled to claim.
“We still hear from many parents who have been told that their child isn’t disabled enough or that they need a diagnosis in order to claim disability living allowance,” she said.
Ofgem announced this week that the next energy price cap, applying from 1 July, could see prices rise by 13%, adding £221 a year to bills for a typical household.
Energy Secretary Ed Miliband said the rise was “deeply unwelcome news for households across the country” and pointed to measures including freezing fuel duty and extending the Warm Home Discount for around six million families.
The Department for Energy Security and Net Zero said the government is “determined to fight people’s corner to tackle the cost-of-living crisis.”
Samantha remains resolute about her priorities despite the financial strain she faces every day.
“I’ve given up me to be here for Lewis, so I will do whatever I need to keep him alive,” she said.