Little Savanah-Bleu O'Brien has had a very tough start to life. The three-year-old was born with a progressive brain disorder called leukodystrophy which stops her from talking, walking and even eating properly.
She's also almost completely blind, has frequent seizures and suffers with terrible muscle spasms which keep her up at night. Her mother Jayde Adams said she spent almost two years without sleeping and has had to give up work to look after the poorly child 24-7.
After finding a routine for Savanah which brought the family some form of normality, they are now facing another form of hardship which threatens to be just as arduous - the cost of living crisis. It was announced by regulator Ofgem on Friday that the typical household energy bill will hit £3,549 a year from October 1.
Read more: Energy bills to soar as major Ofgem price cap rise announced - live updates
As Savanah requires a special machine to feed her through her stomach, their electricity bills are higher than average and are set to rise further in the coming months. And as the winter approaches Jayde will need to ensure their home remains warm as her daughter could become severely ill if she caught even the mildest of colds. They also have plans to install a lift and hoist which will add further pressure to their outgoings.
"It's a constant worry every single day. My mind doesn't shut off from it," explained Jayde, from Capel Llanilltern on the outskirts of Cardiff. "If it gets even a little bit cold we have to put the heating on straight away as Savanah cannot control her body temperature. She's also got to have regular baths as she suffers with really bad skin. If it gets dry she gets irritated by it and scrams her face.
"She's still got her hearing so we've constantly got the TV on in the background, and we also have sensory lights in her room which help her sleep. I'm dreading how much our energy bills are going to increase in October."
Jayde, 30, said when she first moved into her home in March she was paying £104 a month for gas and electric, but within a fortnight it went up to £122. She said she has already been told by British Gas that their bill is going to rise to £174 very shortly.
"I can't work so I only get Universal Credit and disability allowance - which is hers, not mine - and carer's allowance. Even though she's started at special school I have to be on constant standby because anything could happen to her at any point in time," she added.
"I don't live with their dad Jamie, but he's up here every single day trying to help out because I have a five-year-old son called Jaxon as well. We're still a really close family but I wouldn't expect Jamie to help pay my bills.
"We can't do much as a family and we can't go far. It is stressful but it's also rewarding as Savanah is the best thing that's ever happened to us. She's still progressing well but it remains difficult for me as I don't get that break. I have to prepare all her meds and feeds at the right time - and I'm the only one trained to do it. I can't switch off at any point."
Jayde said she became ill herself due to her lack of sleep, but she said the charity Ty Hafan proved to be a godsend. The hospice based in Sully, Vale of Glamorgan, cares for life-limited children and their families and offers much-needed respite.
"They take a bit of weight off my shoulders. You can visit any day of the week and they have a beautiful little park. When I'm there I feel like I'm home but with less stress and worry," she added. "They do loads of different activities and they include the siblings so much."
Jayde said while she is just about managing to balance the bills as things stand, she does worry about what the future holds.
"I'd starve myself to make sure my kids were fed and got what they needed. Thankfully I've never got to that point as I'm pretty sensible with money. I pay all my bills off first, do my food shop and then I always make sure I have a bit of spare money just in case. Savanah has her milk specially made as her bones are so weak that they could snap, so you have to be really gentle with her."
Tracy Jones, director of family wellbeing and outreach at Ty Hafan children's hospice, said: "Families of children with life-shortening conditions are among some of the most vulnerable in Wales. Energy bills for these families are often higher due to the need for life-saving equipment such as oxygen concentrators and ventilators, feeding pumps and suction units in the home.
"In 2019, the charity Scope estimated that families with a disabled child faced, on average, extra costs of £581 a month. The impact of energy price rises and the overall rise in the cost of living will have increased that figure dramatically. We would therefore urge the Welsh Government, the UK Government and energy suppliers to recognise and prioritise their specific needs as a matter of urgency and to proactively do whatever they can in order to protect these children and their families from the devastating impact of the cost of living crisis."
Figures from the Welsh Government have revealed that nearly half (45%) of households are already in fuel poverty, with researchers from the University of York forecasting that will rise to 68.7% when January's price cap rise comes into force.
The Welsh Government's Minister for Social Justice, Jane Hutt, has hit out at the inaction of the UK Government and their failure to support the most vulnerable with the cost-of-living crisis. She said: "Hundreds and thousands of families right across Wales and the wider UK are facing the biggest fall in living standards since records began. The projections for those who will be plunged into poverty are unforgiving and all the while we are faced with the unacceptable three-pronged chaos of a failing UK Government, a cruel price cap increase and the record profits of oil and gas giants.
"While oil and gas giants bathe in record profits from shaking down customers and revelling in government support packages, the UK Government fails to even acknowledge an emergency budget is necessary. People across Wales need support now. We need an emergency budget, we need to freeze gas and electricity prices immediately and we need to tax the oil and gas giants making record profits."
Chancellor of the Exchequer, Nadhim Zahawi said: "I know the energy price cap announcement will cause stress and anxiety for many people, but help is coming with £400 off energy bills for all, the second instalment of a £650 payment for vulnerable households, and £300 for all pensioners."
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