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Sophie Lewis knows one day she will face the most devastating moment for any parent – her daughter will die.

But when Isabel is gone the family will be left with not just overwhelming grief – but also a mountain of debt.

Isabel has Batten disease, a fatal disease attacking her nervous system. Children have a life expectancy of up to ten years. She is now 12.

But while the mum-of-four should be caring for her child, she is also fighting another battle: the rising cost of living.

“All we have ever done is fight – you fight for everything, but you don’t want to because that word ‘fight’ feels quite gross,” she told Sky News.

“Really what you are trying to do is give your child a good death and give them a good quality of life and comfort in the meantime.”

The Lewis family runs a “mini-intensive care unit” for Isabel, who now requires two-to-one care around the clock.

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Three years ago, at the same time of year, it cost them £4.60 a day. This has now risen to £16.06, and the family has no idea how it is going to pay its soaring bills.

Ms Lewis, from Guildford, said: “In my deepest, darkest moments I have thought, I can’t go on like this, and the only thing that will stop it is if our daughter dies. And that is a terrible way to think, it’s heartbreaking.”

“We are only just surviving [the cost of living crisis],” she added.

“I don’t know what things will look like in a year or two if things continue as they are.”

‘There is nothing we can do’

Isabel experienced a few minor health issues before she was three and then, shortly before the birth of Ms Lewis’ second child, she was diagnosed with Battens disease.

“We just got a phone call one day telling us that she was going to die and there was nothing we could do about it,” she said.

Battens is a recessive disease, and Isabel “very rapidly began to lose her skills”.

She went from walking to crawling, to not being able to sit up anymore. Previously a chatty toddler, she was soon unable to say certain words and eventually stopped speaking altogether.

Isabel then lost her ability to swallow and eat, and eventually went blind.

By the time she was three, she needed full-time care.

The one place she is not in pain

Isabel is constantly in pain, except for when she is in the family’s hydrotherapy pool – a hot tub in the back garden.

But with their bills now topping £600 a month, of which they can barely afford to pay half, the family feel it can no longer turn this on.

“I feel guilty for talking about removing what some people might think is a luxury item in our home,” said Ms Lewis.

“But Isabel is bedbound, housebound, hasn’t left the house for over a year, hasn’t been to school for five years – her childhood and her life have been taken away from her.

“Suddenly I was in a position where I was thinking we can’t actually afford to heat the pool, the one place she is pain-free, and the one place where I can still hold her.

“And that is really hard to talk about because people lead you to a place over the years where they make you think having these things is your choice.”

She said parents are saving the NHS money, as Isabel’s hospital care would cost anywhere between £1,500 and £3,000 a day.

“We are doing that for her at home – as we should do, and we want to do that,” she said.

“She has only been in this situation for a few years and she won’t be here in a few years’ time.”

 Isabel on her 11th birthday
Image:
Isabel on her 11th birthday

Growing mountain of debt

The family can no longer afford to keep up with its escalating energy direct debit and every day falls further into debt.

“It’s insulting hearing people say, put on a jumper or use an air fryer,” Ms Lewis said.

“Yeah, we could do all of that, but it still wouldn’t take away from the fact our energy bills are high, because we are at home all the time, we are running equipment and the heating is on to help my daughter regulate her temperature.”

The Lewis family is not alone.

Together For Short Lives is fundraising to provide grants to children receiving palliative care.

One family the charity supports recently hit the headlines after Kate Winslet donated £17,000 to help cover their rising energy bills.

Freya and Carolynne - cost of living disabilities
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Freya and Carolynne were supported by actress Kate Winslet

Every parent’s worst nightmare

Andy Fletcher, its chief executive, said there are about 99,000 children living in the UK with a life-limiting or life-threatening condition.

Of these, around 3,000 are children who need ventilators to keep them alive.

“Parents already facing the emotional turmoil of the potential of their child dying in childhood, which is every parent’s worst nightmare,” he told Sky News.

“And on top of that, they’re trying to make as many special memories as possible with their children and family.

“And these are memories that will last them a lifetime, but at the same time, they’ve got these external pressures of rising costs.

“And that’s the real challenge when you are making choices at this time of year of what to prioritise because the number of Christmases they have may very well be short.”

A heart rate of four beats per minute

Hand in hand with soaring energy costs is the risk of blackouts in the UK, as rising demand puts pressure on supplies.

For 10-year-old George, a power cut at night is a matter of life or death.

With a resting heart rate of four beats per minute, he requires a ventilator at night to help him breathe.

Grandmother, Nicola Gatbutt, helps with his care as his mother, her daughter Holly, faces her own health issues.

After collapsing at work, Holly is now partially sighted.

George, Holly and Harvey
Image:
George, Holly and Harvey

But she has been told she does not qualify for personal independent payments – given to those who have a “long term physical or mental health condition” – despite not being able to drive, and having collapsed twice in the last two months and broken two joints.

Meanwhile, her electricity bill has tripled, taking it from £200 to £600.

“I am dreading my next bill,” Ms Gatbutt, from Skipton, said.

She goes to school with George five times a week as his carer and looks after him on some evenings, weekdays, and during the school holidays.

Energy companies, the grandmother and mother-of-three said, need to reduce their costs for children on long-term ventilation and provide them with more concrete advice on what to do in the face of a blackout.

‘He will never outgrow it’

The family also faces increased petrol costs – what used to cost £30 to and from the hospital now costs £55 – and Ms Gatbutt’s own mortgage has tripled, and now costs £305.

George has been ventilated since he was one year old and “he will never outgrow it”.

George in hospital (left) and pictured with his older brother Harvey (right)
Image:
George in hospital (left) and pictured with his older brother Harvey (right)

Despite his complex medical problems, Ms Gatbutt said: “If you see him in person it’s a different picture. He does cross country, he has just run a big race.

“He lives life to the full.”

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Protesters throw powder on Tower Bridge during London Marathon

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Protesters throw powder on Tower Bridge during London Marathon

Two pro-Palestinian demonstrators have thrown red powder on Tower Bridge – just moments before leading runners in the London Marathon went past.

The protesters were arrested on suspicion of causing a public nuisance and remain in custody, said the Metropolitan Police.

A video shared by Youth Demand, which is calling for a trade embargo on Israel, shows two people jumping over a barrier that separates spectators from the race course.

The pair, wearing t-shirts that say “Youth Demand: Stop Arming Israel”, are then seen standing in the middle of the road on the bridge.

Pic: LNP
Image:
Pic: LNP

They throw red powder in the air as an official marathon car goes past displaying the race time.

A motorbike with a cameraman on board continues along the route, while a second motorbike stops and one of the riders gets off and pushes the pair out of the way, just before the men’s elite runners pass.

Several police officers then jump over the barrier and detain the pair, the footage shows.

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There appeared to be no impact on the marathon.

More than 56,000 participants were expected to take part in the 26.2-mile race through the capital.

Sabastian Sawe of Kenya won the men’s elite race in a time of two hours, two minutes and 27 seconds, while Ethiopia’s Tigst Assefa shattered the women’s-only world record in two hours, 15 minutes and 50 seconds.

Assefa beat the previous best of two hours, 16 minutes and 16 seconds set last year in London by Kenyan Peres Jepchirchir.

Read more:
Sky’s Beth Rigby running marathon in honour of ‘dearest friend’
Badenoch does not rule out local coalitions with Reform

Pic: LNP
Image:
Pic: LNP

The Metropolitan Police said in a statement: “At around 10.38am, two protesters from Youth Demand jumped over barriers at Tower Bridge and threw red paint on to the road.

“Marathon event staff intervened to remove the protesters from the path of the men’s elite race which was able to pass unobstructed.”

The force added that they were “quickly supported by police officers who arrested the protesters on suspicion of causing a public nuisance”.

The Met said the paint “appeared to be chalk-based” and was not expected to “present a hazard to runners yet to pass this point”.

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Kemi Badenoch does not rule out local coalitions with Reform after next week’s council elections

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Kemi Badenoch does not rule out local coalitions with Reform after next week's council elections

Kemi Badenoch has not ruled out forming coalitions at a local level with Reform after the council elections next week.

Speaking to Sunday Morning with Trevor Phillips, the Conservative leader did however categorically rule out a pact with Nigel Farage’s party on a national level.

“I am not going into any coalition with Nigel Farage… read my lips,” she said.

However, she did not deny that deals could be struck with Reform at a local level, arguing that some councils might be under no overall control and in that case, “you have to do what is right for your local area”.

“You look at the moment, we are in coalition with Liberal Democrats, with independents,” she said. “We’ve been in coalition with Labour before at local government level.

“They [councillors] have to look at who the people are that they’re going into coalition with and see how they can deliver for local people.”

She added: “What I don’t want to hear is talks of stitch-ups or people planning things before the results are out. They have to do what is right for their communities.”

More on Electoral Dysfunction

A total of 23 councils are up for grabs when voters go to the polls on Thursday 1 May – mostly in places that were once deemed Tory shires, until last year’s general election.

It includes 14 county councils, all but two of which have been Conservative-controlled, as well as eight unitary authorities, all but one of which are Tory.

Ms Badenoch has set expectations low for the Tories, suggesting they could lose all the councils they are contesting.

The last time this set of councils were up for election was in 2021, when the Conservative Party was led by Boris Johnson who was riding high from the COVID vaccine bounce.

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Counter-terrorism police investigating after two women injured in Leeds

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Counter-terrorism police investigating after two women injured in Leeds

Counter-terrorism police are investigating after an incident involving a crossbow and a firearm left two women injured in Leeds.

Police were called to Otley Road at 2.47pm on Saturday to reports of a “serious incident involving a man seen with weapons”, West Yorkshire Police said.

Officers arrived at the scene to find two women injured – and a 38-year-old man with a self-inflicted injury. All three were taken to hospital, with the man held under arrest, but their injuries are not believed to be life-threatening.

“Two weapons have been recovered from the scene, which were a crossbow and a firearm,” Counter Terrorism Policing North East said in a statement.

The incident happened on the ‘Otley Run’ pub crawl, with one venue saying it was closed for the evening due to “unforeseen circumstances”.

Officers guard one of the crime scenes in Leeds
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Officers guard one of the crime scenes

Officers inside the cordon in Leeds
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Officers inside the cordon in Leeds

Counter Terrorism Policing’s statement added: “Due to the circumstances surrounding the incident, Counter Terrorism Policing North East have taken responsibility for leading the investigation with the support of West Yorkshire Police.

“Extensive enquiries continue to establish the full circumstances and explore any potential motivation.”

Home Secretary Yvette Cooper described it as a “serious violent incident” and said she was being kept updated by police.

“Thank you to the police and emergency services for their swift response,” she said. “My thoughts are with the victims and all those affected by this attack.”

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