‘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.”
An MP has told Sky News she was attacked online by the Tate brothers after she participated in a debate in the House of Commons about violence against women.
The controversial duo, Andrew and Tristan Tate, are facing charges of rape and human trafficking in the UK – all of which they deny.
But they are still very active online, and according to Sorcha Eastwood, the MP for Lagan Valley, are targeting her.
In a document seen by Sky News, Tristan Tate has highlighted one of the MP’s tweets and writes in private correspondence: “MP, nice target, can we sue her?”
Sorcha Eastwood says at first she thought the replies were from parody accounts and not the Tate brothers.
Her original tweet was about Elon Musk, not the Tate brothers. The MP said Musk’s tweets should be looked at through a counter-extremism lens.
“I was really concerned, I was concerned because to me that is a direct attack for want of a better phrase on me serving my constituents.
“I couldn’t believe that they decided to pick this random Northern Irish MP. The fact that it wasn’t even about them. This is something I didn’t go looking for.
“I think from my perspective, it’s a very, very sinister attempt to shut down important voices in public life, political discourse.”
It was only when she started noticing an uptick in abuse from other accounts she realised she had encountered some of the brothers’ followers.
“I had rape threats. I had death threats. I had people saying I should be hung from a lamppost. I had people saying I should be chopped into liver. I also had people then who were like we’ll waste 15 minutes raping Sorcha Eastwood.”
A representative for the Tate brothers told Sky News that there was no targeted campaign against Sorcha Eastwood
A representative for the Tate brothers told Sky News that there was no targeted campaign against her.
They said: “Ms Eastwood has a distorted view regarding social media if she believes one is required to ‘invite or ask’ people to interact.
“Tristan Tate is entitled to his view in relation to her tweet regarding Elon Musk.”
The self-styled “misogynist influencer” Andrew Tate and his brother Tristan have both been charged with human trafficking, face allegations of trafficking minors, sexual intercourse with a minor and money laundering in Romania.
There is also a European arrest warrant for them as they are facing separate, unrelated charges of rape and human trafficking in the UK. They deny all charges.
Ms Eastwood now worries for others who don’t have a platform like her and who may not feel like they can speak out.
“If this is what has happened to me I have absolutely no doubt that this has happened to others where they have been attempted to be silenced.”
Keir Starmer has previously commented on the Tate brothers’ case in the Commons saying it is “a live issue”, but adding that “the principle is absolutely clear” in relation to whether the brothers should face justice.
Sorcha Eastwood says she wants to see the government do much more to protect against abuse online.
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Tate brothers deny wrongdoing
“I think ultimately the government has taken the wrong course on this. They need to step up.
“This should be an issue of national security as far as the radicalisation of young people online. It should be an issue in terms of the levels of misinformation, disinformation and the lack of trust that is had in our politics right across the UK and Europe.
“I want the government to help me, help every other person to crack down on this and get serious about it. And the only way they’ll be able to do that, is by hitting these tech companies in the only language which they understand, which is money and via robust legislation.”
A government spokesperson said: “Violence against women and girls is a scourge on our society which is why we have set out an unprecedented mission to halve these crimes within a decade.
“Tackling illegal abuse both online and offline is central to supporting victims and preventing harm in our communities and we will not hesitate to strengthen laws to deliver this mission.
“Last month, parts of the Online Safety Act came into force meaning companies must take action to protect users from illegal material including extreme sexual violence.
“Further protections from this summer will require platforms to protect children from harmful, misogynistic, and violent content.”
UK
‘It’s just nasty’: Birmingham residents ‘overwhelmed’ by foul stench and massive rats as bins strike rumbles on
In parts of Birmingham, the stench is overwhelming – enough to make you heave.
At a block of flats in Highgate, in Birmingham city centre, we find a mountain of bin liners full of rubbish spewing out of the cavernous bin store, which is normally locked.
Mickel comes out to speak to us, while all around bin liners lie open, with the contents for all to see, including used nappies and rotting food.
Mickel says they’ve had ‘foxes and rats, literally the size of cats’
Outside Mickel’s flat in Highgate, bin liners lie open, spewing out rubbish
We both find it hard to keep talking amid the awful smell.
“We’ve had foxes and rats, literally the size of cats, flies, it’s just nasty, something needs to be done,” he says.
Chris says the situation is ‘overwhelming’ as she’s ‘terrified of rats’
Around the corner, I meet Chris, in her dressing gown, popping the bins into her bin store beneath her flat before work.
She unlocks it, and although it isn’t bursting out on to the street yet, it is getting full.
She says the situation is “overwhelming” as she’s “terrified of rats”. But, even so, she has sympathy for the striking bin workers.
“It’s not an easy job; they must have a heart of gold to do that job,” she says.
“Pay them whatever they need, they deserve it.”
Striking bin workers at Lifford Lane tip, south of the city centre
There’s an awful smell coming from a mountain of bin liners outside Mickel’s flat in Highgate
At Lifford Lane tip, south of the city centre, Brigette has pulled up alongside picketing workers. The back seat of her car is full of rubbish.
She apologises for the terrible waft, mixed with air freshener.
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Bin workers strike explained
“It’s very pungent, isn’t it? Not nice,” she admits.
“It’s unfortunate, I have some sympathies for all the parties, but, equally, we have a duty of care to stay clean and tidy.”
She says she has her rubbish and that of her elderly aunt and plans to make weekly trips to the tip until a resolution in this pay dispute between the council and the Unite union is found.
UK
‘US is our closest ally’, Jonathan Reynolds says in reaction to Trump tariffs – but ‘nothing off the table’
The US is “our closest ally” but “nothing is off the table” in response to Donald Trump’s 10% tariffs on imports from the UK, the business secretary has said.
In a statement following the US president’s nearly hour-long address to the world, Business and Trade Secretary Jonathan Reynolds said: “We will always act in the best interests of UK businesses and consumers.
“That’s why, throughout the last few weeks, the government has been fully focused on negotiating an economic deal with the United States that strengthens our existing fair and balanced trading relationship.”
Follow the latest following Trump’s tariffs announcement
Mr Reynolds reiterated the statements from the prime minister and his cabinet over the past few days, saying the US is “our closest ally”, and the government’s approach is to “remain calm and committed to doing this deal, which we hope will mitigate the impact of what has been announced today”.
Business Secretary Jonathan Reynolds says “nothing is off the table” following the tariffs announcement. Pic: PA
But he continued: “We have a range of tools at our disposal, and we will not hesitate to act. We will continue to engage with UK businesses, including on their assessment of the impact of any further steps we take.
“Nobody wants a trade war, and our intention remains to secure a deal. But nothing is off the table, and the government will do everything necessary to defend the UK’s national interest.”
‘Get back round the negotiating table’, say Tories
The Conservative Party’s shadow business and trade secretary described the US president’s announcement as “disappointing news which will worry working families across the country”.
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Sky’s Ed Conway examines how economies across the world are impacted by tariffs
Andrew Griffith hit out at the government for having “failed to negotiate with President Trump’s team for too many months after the election, failed to keep our experienced top trade negotiator, and failed to get a deal to avoid the imposition of these tariffs by our closest trading partner”.
“The chancellor’s emergency budget of just a week ago with its inadequate headroom is now at risk, casting uncertainty about more taxes or spending cuts,” he continued. “Sadly, it is British businesses and workers who will pay the price for Labour’s failure.”
He called on ministers to “swallow their pride” and “get back round the negotiating table to agree a fair deal to protect jobs and consumers in both the UK and the US alike”.
Liberal Democrat leader Sir Ed Davey has reacted furiously to Mr Trump’s announcement of a “destructive trade war”, and called on the government to stand up against “Trump’s attempts to divide and rule”.
“The prime minister should bring our Commonwealth and European partners together in a coalition of the willing against Trump’s tariffs, using retaliatory tariffs where necessary and signing new trade deals with each other where possible.”
Speaking on Wednesday evening at a White House event entitled ‘Make America Wealthy Again’, the US president unleashed sweeping tariffs across the globe.
Mr Trump held up a chart detailing the worst offenders – which also showed the new tariffs the US would be imposing.
The UK’s rate of 10% was perhaps a shot across the bow over the 20% VAT rate, though the president’s suggested a 10% tariff imbalance between the two nations. Nonetheless, tariffs of 10% could directly reduce UK GDP by between 0.01% and 0.06%, according to Capital Economics.
A 25% duty on all car imports from around the world is also being imposed from midnight in the US – 5am on Thursday, UK time.
Read more:
World reacts to Trump’s tariff announcement
Tariffs will have consequences for globalisation, the US economy and geopolitics
Trump’s tariffs explained
The UK government had been hoping to negotiate an economic deal with the US in a bid to avoid the tariffs, but to no avail. The government says negotiations will continue.
The Confederation of British Industry said “negotiating stronger trading relationships with all like-minded partners will be foundational to any success”.
The business secretary is expected to make a statement in the House of Commons on Thursday, and we are also expecting to hear from the prime minister.
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