‘We just want to give our child a good death’: The family battling grief and a mountain of debt
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.
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
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 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
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)
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.”
Footage of the moment 10-year-old Sara Sharif’s alleged killers were detained after police boarded their plane back to the UK has been played in court.
As they are approached by officers, Sara‘s stepmother Beinash Batool is heard saying: “I think you’re looking for us.”
Batool, 30, Sara’s father Urfan Sharif, 42, and uncle Faisal Malik, 29, are accused of carrying out a campaign of abuse against her culminating in her death at her family home in Surrey on 8 August last year.
The defendants, along with five of Sara’s siblings, aged between one and 13, flew to Pakistan the following day.
Sara’s body was found by police in a bunkbed on 10 August after Sharif called police from Pakistan to say he had beaten her “too much” for being “naughty”.
A murder investigation was launched involving agencies including Interpol and the National Crime Agency to locate the defendants.
They returned to the UK on a flight from Dubai to Gatwick Airport on 13 September.
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‘I beat her up too much’
The clips of officers’ body-worn video shown to the jury on Friday captured the moment police boarded the plane and detained the defendants at 7.42pm, seven minutes after touchdown.
After Batool addresses the officers, Sharif, who had been sitting next to her, is asked to follow them.
The three were then taken off the plane and arrested.
Pic: Surrey Police
A post-mortem examination established Sara had sustained extensive and significant injuries over a sustained period prior to her death.
The jury heard on Friday how concerns were raised by Sara’s school about bruising on her body in June 2022 and March 2023.
Read more:
Stepmother said Sara Sharif’s father beat her up ‘like crazy’, jury told
Sara Sharif ‘never smiled once’, jury told
Several items seized from Sara’s home were also reviewed by the court, including a leather belt which had full DNA samples at both ends for Sara, Sharif, and Malik.
A cricket bat was also found to have Sara’s DNA profile on it, along with the DNA samples of Sharif and Malik.
Neither item had a DNA trace of Batool.
The court also reviewed the defendants’ bank accounts – both joint and separate.
All three defendants have pleaded not guilty to murder and causing or allowing the death of a child.
The trial continues.
Six teenagers have been arrested after a 13-year-old girl was found with multiple stab wounds on a roadside near Hull.
Police said she was found around 6.50am on the A63 in Hessle with “life-threatening injuries” including “lacerations to her neck, abdomen, chest and back”.
Four boys and two girls – aged between 14 and 17 – were quickly arrested in a nearby wooded area and are being questioned on suspicion of attempted murder.
Members of the public came to the girl’s aid before emergency services arrived, Humberside Police said.
Detective Superintendent Simon Vickers said they “believe the attackers knew the victim” and the circumstances are still being investigated.
“The girl remains in hospital in critical condition and her family are being supported by officers at this difficult time,” he added.
The boys arrested are aged 14, 15, 16 and 17, and the girls 14 and 15.
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Boy who attacked sleeping students with hammers is named
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Cordons are in place around a wooded area off Ferriby High Road while investigations continue.
Police said they would have an increased presence in the area over the weekend and have asked anyone with information or video to get in touch, or contact Crimestoppers anonymously.
UK
Ex-soldier Daniel Khalife tells court it was a ‘foolish idea’ to have someone with his ‘skillset’ in prison
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.
A makeshift sling. Pic: Met Police
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
“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.”
Daniel Khalife joined the Army aged 16
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.”
Daniel Khalife
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”.
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Teenager who murdered 15-year-old ex-girlfriend jailed for life
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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.
The trial continues.
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