George is ten years old and is cared for part-time by his grandmother, Nicola, due to his mum having her own complex medical conditions and ill health. Nicola goes to school with him five times a week as his carer and looks after him on some evenings, weekdays and during the school holidays.
He has a resting heartrate of four beats per minute and requires a ventilator at night to allow him to breathe, alongside a nebuliser machine, feeding pump, suction machine and SATS monitor.
“George is one of the most medically complex children there is. We have so many pieces of medical equipment to keep him alive.” says Nicola.
George’s brother, Harvey, has congenital heart disease and struggles to keep warm, so the heating has to be running constantly to keep him comfortable and safe.
With the rise in cost of living, Nicola is increasingly concerned about what this means for her family: “The cost of everything has gone up; energy, food, petrol and even my mortgage payments – they have nearly trebled. I already pay almost £400 a month for energy, and this is expected to double. It’s a two-hour drive to get to George’s hospital appointments and we’ve been four times this month alone.”
“My daughter, Holly is the most selfless person I know, she never moans or complains – she tries to not let anything worry her, but I know this is really affecting her. She gets some support from the government, but a child on a ventilator is very different to other children. They use so much more electricity.”
And on top of this Nicola worries about the dangers of winter blackouts: “I don’t know what we would do if there were blackouts. George can’t breathe at night without his ventilator, it would be impossible for us to care for him at home. We would have to take him to the hospital.”
Nicola says the cost of living is also having an impact on the children: “We have cut back on things we do as a family, and this is a huge thing when your children are seriously ill. We try to live life to the full each and every day.
Families caring for a seriously ill child who depends on vital equipment to stay alive are facing spiralling energy costs they just can’t afford.
Together for Short Lives’ Cost of Living Support Fund will help ease the burden of families’ rising bills, so they can keep life-sustaining equipment running. By supporting this emergency fund, you can help these families with this constant worry, allowing them to focus on making lasting memories and celebrating Christmas, one that may be their last.