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.”
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.
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.
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”.
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.
A former soldier has told a jury his escape from Wandsworth prison to avoid being held with sex offenders and terrorists showed his “skillset”.
Daniel Khalife, 23, who was being held accused of passing secrets to Iran said he was “never a real spy” but planned a fake defection to the state following his arrest after watching American television show Homeland.
He said he wanted to be moved to a high-security unit because he was getting unwanted attention from the sex offenders on the vulnerable prisoners wing and feared a move to Belmarsh prison because, as a British soldier, terrorists wanted to kill him.
Khalife said he first wanted to “make a show” of escaping, acting suspiciously and covering himself in soot from a food delivery lorry on 21 August last year, while he was working in the prison kitchen.
He was spotted and reported to security but was “pretty shocked” when nothing happened so decided to take the “full measure,” he told the jury.
Talking about his escape for the first time at his Woolwich Crown Court trial, Khalife told how he fashioned a makeshift sling from kitchen trousers and carabiners used by inmates to keep their possessions safe from rats.
He attached it to the Bidfood lorry on 1 September last year, to see if it would be spotted by officers at Wandsworth or other prisons on the delivery route.
“I put the two carabiners and the makeshift rope underneath the lorry,” he said.
“When I had made the decision to actually leave the prison I was going to do it properly so I tested the security not just in Wandsworth
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“Strangely, over the coming days, I could see it but it wasn’t spotted in Wandsworth or any other prison.”
Then on the morning of 6 September, Khalife said he concealed himself underneath the lorry, resting his back on the sling as the lorry was searched.
“They did normal checks around with torches but they didn’t find me. After that, a governor came to the tunnel and said, ‘Have you searched the vehicle?’
“I was facing upwards. There was action around the lorry.”
He said that when the vehicle stopped he “came out underneath the lorry and stayed in the prone position” until the lorry moved off.
Khalife, who joined the Army aged 16 and took up a post with the Royal Signals, based in Beacons barracks, Staffordshire, said he made no attempt to leave the country and had no intention to “run away” from the charges he was facing.
He was arrested three days later on the footpath of the Grand Union Canal in Northolt, west London, after a nationwide manhunt.
Asked why he had not handed himself in after his escape, Khalife said: “I was finally demonstrating what a foolish idea it was to have someone of my skillset in prison. What use was that to anyone?”
“I accept that I left the prison and didn’t have any permission to do so,” he said. “I accept absolutely that I shouldn’t have done what I did.”
Inspired by Homeland
The court has heard Khalife initiated contact with Iranian intelligence officers after he was told he could not pass developed vetting because his mother was born in Iran.
Khalife told MI5 he wanted to be a “double agent” and he said in court he thought he would be “congratulated” but described his arrest as like a “punch in the face”.
Wearing a blue checked shirt and chinos, he said police were “blinded at the prospect of a successful prosecution” but he did not think being in prison would be in “the public interest”.
“I didn’t do anything that harmed our national security. I wanted to put myself in a position where I could help my country,” he said.
“I believed I could continue my work actually located in the state – the state being Iran.”
Khalife said he took inspiration from watching Homeland, starring Claire Danes and Damian Lewis, in which Americans and terrorists go undercover, on Netflix.
“I had seen one of the characters in the programme had actually falsely defected to a particular country and utilised that position to further the national security interests of that character’s country,” he said.
“The country in question, Iran, thought it was real. She did it to further the interests of her own country.”
Khalife told jurors he is a “patriot”, adding: “I do love my country. All I wanted to do was help. I never wanted to do any harm, I never did do any harm.”
He added: “It is tragic it has come to this and I would do anything to go back to my career.”
Khalife, from Kingston, southwest London, denies a charge of committing an act prejudicial to the safety or interests of the state under the Official Secrets Act between 1 May 2019 and 6 January 2022.
He has also pleaded not guilty to a charge under the Terrorism Act of eliciting information about Armed Forces personnel on 2 August 2021, perpetrating a bomb hoax on or before 2 January 2023 and escaping from prison on 6 September last year.
Huang, who turns 18 in January, was dressed only in his boxer shorts when he repeatedly hit his dormmates as they slept in one of the boarding houses at the co-ed Blundell’s School in Tiverton, Devon, in June last year.
Both boys suffered skull fractures, as well as injuries to their ribs, spleen, a punctured lung and internal bleeding. He then attacked a teacher who attempted to intervene.
They had been asleep in cabin-style beds when Huang climbed up and attacked them shortly before 1am on 9 June last year.
Maths teacher Henry Roffe-Silvester told Exeter Crown Court he was asleep in his own quarters when he was awoken by noises coming from the boarding house and went to investigate.
He said he saw a silhouetted figure standing in front of him in the room who then turned and repeatedly hit him over the head with a hammer.
“Physically I stumbled backwards into the corridor. There was a second blow – I can’t remember if it was before I stumbled back – that’s a little bit hazy for me,” said Mr Roffe-Silvester, who suffered six blows to the head.
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Another student heard Mr Roffe-Silvester shouting and swearing as he fled the bedroom and dialled 999 – believing there was an intruder.
The two boys were discovered in their beds a few minutes later.
Huang, from Malaysia, who was 16 at the time, admitted carrying out the attacks but said he was sleepwalking. He denied three charges of attempted murder on the basis he was not guilty by reason of insanity.
But the court was told he had an obsession with the killing of children and hammers, which he said he kept by his bed for “protection” from the “zombie apocalypse”.
Prosecutors said the boy armed himself with three claw hammers and waited for the two boys to be asleep before attacking them.
At his sentencing hearing last month, judge Mrs Justice Cutts said experts could not say how long he would pose a risk to the public as she jailed him for life with a minimum term of 12 years.
“You planned your offences and used hammers you had bought as weapons,” she told Huang, adding that, as an “intelligent boy”, he “knew full well if you hit the boys multiple times with the hammers they would die”.
She told him there was a significant risk he could repeat his attack and therefore he posed “a high level of danger to the public because of the nature of your offences”.
In evidence, Huang told the jury he wanted to come to England to study in a boarding school and was “excited” to do so.
Asked if he was happy at the school, he replied: “Yes I was. I liked my friends, my teachers and the academic aspect of it. I didn’t like the sports and the food at the school.”
He described life at the boarding school, including pupils sharing takeaways and tubs of sweets.
The court heard Huang’s brother, who is two years older than him, also went to Blundell’s.
Huang can be named after a court official confirmed his lawyers would not be appealing the judge’s earlier decision to lift the reporting restriction, which was made at the sentencing hearing following an application by the PA news agency.
As mother-of-three Danielle pushes two prams down the street in south London, her only thought is where will they all sleep tonight?
The 21-year-old, whose children are all under the age of five, had a council house in Southwark but had to move out because she faced threats of violence.
“I didn’t know that going to the police would end up with me being homeless,” she says.
Heartbroken and panicking, with nowhere else to go, Danielle is in a park with her three children – two daughters, aged one and four, and her two-year-old son.
“I’m so sorry, I wish this could all be better,” she tells them. Her eldest clutches a plastic toy and asks when they are going home.
“We don’t have a home anymore,” Danielle replies. She can’t hide the truth from her any longer.
Danielle, who has long dark hair and is wearing a puffer jacket, is pacing, her mobile phone pressed to her ear, making a series of desperate phone calls, pleading for help.
“Where am I going to go with the kids,” she asks a housing officer. “I have nowhere to go.”
At this point it’s around 3pm and council offices will soon be closing. As her phone dies, Danielle, now sitting on a bench, her eldest daughter comforting her siblings in their buggies, breaks down in tears.
It is hard to imagine someone more vulnerable; a 21-year-old, at risk of violence, a care leaver herself, mother-of-three. If she’s fallen through the net, then who is it catching?
Initially, Southwark council paid for her to have temporary accommodation elsewhere.
But things changed when police informed them it was too dangerous for her to come back to the borough.
“To sit there and tell a four-year-old little girl we can’t go home because we don’t have a home, that’s very upsetting as a mum because I brought her into this world to love her, protect her, to give her a home, and me being a mum telling her I can’t do that right now, it breaks my heart, but I know it’s not my fault,” she tells Sky News.
“Last Tuesday, I got a call to say they could no longer fund my accommodation because the police said it’s no longer safe to return back to Southwark, so they don’t owe me a duty of care.”
The council emailed her a letter which implied she was being made homeless for her own protection. The letter instructed her to present herself to another “local authority homeless person unit to seek rehousing outside of Southwark,” it said. “This is on the grounds of personal protection for you and your children.”
The letter, dated 30 September, explained her current accommodation would terminate on 9 October.
But, when Danielle approached another council, they wanted more details from Southwark. In the meantime, her landlord said Southwark had stopped paying, so he evicted her and changed the locks.
“We are just going around in a loop and in the meantime me and my children are homeless, and nobody seems to care,” she told us when we found her on 10 October.
“They are not protecting me or my children, they’ve put us at an even more high risk, but they don’t seem to acknowledge that.”
As we sit on the park bench together, a Southwark housing officer calls confirming that, despite her being on the streets, they would not extend the temporary accommodation. The person on the phone says it was a management decision.
At this point, we call Southwark’s press office and get a very different tone and a sense that the situation isn’t acceptable.
After an anxious wait, by late afternoon Danielle is told she can return to her temporary accommodation.
But while Danielle was on the streets, she took her child for a routine vaccination and was flagged with children’s social services, which adds to her worries.
“I know I am a good mum,” she says. “A doctor might have thought my nails were dirty or I didn’t look like a normal person, but she has to understand, I had nowhere to go that day.
“I had no keys, nowhere to live. I was living out of a black bag in my grandad’s shed. So, what do you expect?”
In a statement, councillor Sarah King from Southwark told us: “This has been a very distressing situation for Danielle and her children, and I hope that she is at least relieved to be in safe accommodation now. We will be working to resolve her housing situation permanently and continue to support her until that happens.”
The council she was applying to told us they believed the issue was now being dealt with by Southwark.
Housing lawyer Simeon Wilmore told Sky he’s come across this kind of thing “many times” and believes both councils have behaved badly.
“Southwark should have been in contact with the receiving party or receiving local authority and it should be more managed and structured, and she should be at the centre of the decision making,” he said.
“If they have reason to believe she may be eligible for priority needs then the duty of care kicks in. They must accommodate.”
The problem is councils have run out of homes. In Southwark alone 17,700 people are on the borough’s waiting list, nearly treble the figure over five years ago.
On average councils spend 1% of their budget on temporary accommodation, but research by Sky News has found 30 councils spend 10% or more, with several spending over 20% of their overall budgets on homelessness. This is council money going to private landlords.
Adam Hugg, head of housing at the Local Government Association, says the numbers of people needing support “are going through the roof” and the lack of available homes “creates a real challenge”.
He says there is a need for long-term investment to build more council houses as well as reform to housing benefit to make sure more people can be kept in their homes.
Danielle has few home comforts in her temporary flat, which has plain white walls and a TV on the floor. Her wish is for a place she can make her own and paint her daughter’s bedroom walls pink.
She has Halloween decorations on a shelf, while in a corner of the living room there is a long box containing a Christmas tree. On top, there is a child’s yet-to-be-filled-out wish list for Father Christmas, while a pack of red and white baubles and a can of snow spray sit nearby.
“These are all my little Christmas bits I’m going to do with the kids when we eventually have a home,” Danielle says, but she still has no idea when that might be.
“They have told me I’m not going to be here for Christmas,” she says. “So, I don’t know where I’ll be. I just hope it’s not on the street.”
It seems the housing crisis has reached a point where even extreme vulnerability is no guarantee of help.
Councils want more secure longer-term government funding so they can build more homes, but with more children than ever living in temporary accommodation, this is a chronic national problem that will take more than one Christmas to solve.