The cost of living crisis means that Marie Cavalier, 41, and her husband are now paying hundreds of pounds more each year to ensure that their daughter Annie, 12, gets the care she needs.
Annie suffers from Sturge Weber syndrome, a rare neurological condition, and uses an epilepsy sensor mat, which acts as an alarm system for seizures and is powered by electricity and in use throughout the night. The family also frequently travel to Great Ormond Street Hospital in London from their home near Halifax.
At the beginning of this month their energy bills almost doubled from £197 a month to £365, while the cost of return train travel to London, which once cost in the region of £80, is now more than £300.
Price rises at the pumps also mean the family is paying almost £90 for a tank of petrol to drive Annie to vital appointments. A full tank used to cost around £60.
Ms Cavalier said: “Families with disabled children have always had additional costs to cover, but the cost of living crisis has made it so much worse. There are so many hidden costs. For example, we have switched to bottles of oxygen for Annie, rather than an oxygen machine, because it is cheaper [without the use of electricity].”
She and her husband are both self-employed and do not qualify for any financial help or grants to support Annie’s care. Ms Cavalier also chairs the Sturge Weber UK support group and warned that families were struggling to survive the cost of living crisis.
“It’s not just energy, it’s food and fuel, everything is going up at an alarming rate. I don’t know how people will survive, it’s so sad,” she added.
Scope, another disability charity, said its energy helpline had been “inundated” by disabled people facing “impossible choices”.
James Taylor from the charity said: “Right now there are disabled people whose condition means they need to keep warm who are having only one meal a day. Others go without so their children can eat, live in a damp house or wake up cold and go to bed early.
“The Government needs to offer targeted financial support for those hit hardest by the price rises. Without such support, it is abandoning disabled people to bear the brunt of this crisis.”