We can’t pay our £6,000 energy bill but we need to use electricity to keep our son alive

Hyde News & Pictures Ltd. 26/08/2022 *************** Picture by Vagner Vidal *************** Sun Features - Cost of living crises Picture shows Lauren Freitas and her son Cohen, 6 photographed near their home in Basingstoke, Hampshire. Lauren is terrified about the impact of the energy crisis due to all the equipment that her son requires. See copy HNP

LIFE for mum-of-three Lauren Freitas is already very stressful as a full-time carer for her disabled son Cohen, 6. 

But rising energy costs mean her family is now facing an annual bill of £6,000 a year. 

Lauren is terrified about the impact of the energy crisis due to all the equipment that her son requires

“Everything my son needs to keep him alive uses electricity,” says Lauren Freitas from Basingstoke.

“It’s really scary. We have a very stressful life as it is, and now it’s even more stressful.”

Her family is one of millions in the UK desperately trying to cut back – but it’s impossible to reduce their usage any more without compromising care for her son. 

At birth, Cohen, now 6, was found to have two genetic deletions – he is the only child in the world with those specific types together – including DiGeorge syndrome, which impacts everything from his digestive system to his mobility.

He can’t walk or talk, and is fed by a tube.

The pump for his feeding equipment has to be charged overnight, plus he has equipment to drain his stomach to prevent him from vomiting.

“He’s fed into his lower intestines for 18 hours a day,” explains Lauren, 35.

On top of this, Cohen needs an electric stairlift and hoists to move him around.

“He also needs sensory lights all night in his bedroom because he suffers with a lot of pain and the lights help calm him down.

“Plus, he uses a tablet to communicate. We’ve also got a camera in his room because he has seizures, so I need to monitor him overnight,” says Lauren.

Added to this, there is the day-to-day use of electricity and, for the Freitas family – which includes Lauren’s husband Mauricio, 35 and teenage sons Malakye, 17 and Tyio, 14 – this is far higher than for the average couple with kids.

Kettles need boiling to sterilise Cohen’s feeding tube and the washing machine is on several times a day.

“He goes through around 10 bibs a day and dribbles through to his clothes.

“He has kidney and bowel issues, so all his clothes get dirty.

‘I’m angry, it’s not my fault my son needs equipment to live’

“We’re constantly having to do washing for him.”

The family’s energy provider has already increased their bills from £140 a month to £240, and the family are predicting they will end up with gas and electric bills of up to £500 during the winter months.

Currently living in a council house in Basingstoke, where they pay £700 a month in rent, Lauren and Mauricio were hoping to soon buy a place of their own.

“Now that’s not going to be possible for a very long time,” she says.

“I’ve stopped watching the news because it makes me nervous. Even just talking about it now is making my heart beat faster.

“It makes me angry too. It’s not my son’s fault that he needs to have all this equipment just so that he can live. Life is hard enough as it is.”

Lauren is Cohen’s full time carer, while Mauricio works three night shifts a week in a warehouse.

They receive Universal Credit and £350 a month in Disability Living Allowance, plus a carer’s allowance of £70 a week.

“I haven’t been able to work since Cohen was born. His needs have become more complex since he’s got older, so there’s no way of me ever going back to work.

“There’s no childcare for medically complex children,” says Lauren.

“My husband tried working full time but it’s so difficult as we both care for Cohen and he was running himself into the ground. He comes home at 2am, is with Cohen until 6am and then we swap shifts.” 

Cutbacks in support for disabled children have made it harder

Cutbacks in support for disabled children have also impacted on the family’s finances.

“Cohen qualifies for free transport to school but he needs someone with him and they don’t have anyone available, so I take him and that uses a lot of fuel.”

“Plus, their local respite centres have all been closed, so they have to travel further afield – rising fuel prices have doubled their petrol costs to £60 a week.” 

Lauren is trying to do what little she can to reduce the family’s outgoings.

‘I’ve bought an airfryer because using the oven to cook dinner costs too much money.

“And we’re talking about not having Cohen’s hoists on, but lifting him is damaging my back.” 

Further uncertainty is also proving worrying for million on benefits, as the government has refused to confirm that payments will rise in line with inflation next year.

Lauren says: “I think it’s really unfair not to increase benefits when they are there to help the people most in need.

“It’s poor ideology to think all people on benefits are lazy scroungers because most are on them because they can’t physically work.” 

The disability charity Scope says that almost half of callers to their helpline are already in, on average, £1,351 of debt to their energy providers.

One in 3 are eating less, buying lower quality food, and not using heating, even when cold.

“We’ve been inundated with calls from disabled people who have cut back everything they can,” says  James Taylor, Scope’s director of strategy.

“The price cap doesn’t cap how much people have to pay on their bills, and the increase will tip many families over the edge.

“Life costs more when you’re disabled, but the new government chose to ignore that fact in the budget. 

“The £150 disability payment won’t touch the sides.”