‘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.
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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.”
UK
Tulip Siddiq: Labour MP accuses Bangladesh’s leader of ‘orchestrated campaign’ to damage her reputation
Former minister Tulip Siddiq has accused the leader of Bangladesh of conducting an “orchestrated campaign” to damage her reputation and “interfere with UK politics”, according to a new legal letter seen by Sky News.
The Labour MP also said comments made by Professor Muhammad Yunus in a Sky News interview have prejudiced her right to a fair investigation, meaning the ongoing corruption inquiries into her should be dropped.
In March, the chief adviser – who is effectively the country’s interim leader – told Sky News that Ms Siddiq “has so many (sic) wealth left behind here” and “should be made responsible”.
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Bangladesh’s leader talks to Sky News
Bangladesh’s Anti-Corruption Commission (ACC) has opened several investigations into Ms Siddiq alleging corruption in connection with the government of her aunt Sheikh Hasina, who was ousted as the country’s prime minister last year.
In the new correspondence sent today to Professor Yunus and the ACC, lawyers for the former minister write: “The time has now come for the chief adviser and the ACC to abandon their wholly misconceived and unlawful campaign to smear Ms Siddiq’s reputation and interfere with her public service.”
Sky News has approached the chief adviser and the ACC for comment.
The Bangladeshi authorities have previously said they have evidence to back up their claims of corruption and will pursue action through the country’s courts.
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The Tulip Siddiq accusations explained
Speaking to Sky News on Monday, Ms Siddiq said: “I will not be allowing them to drag me into their world of dirty politics and nothing is going to stop me from pursuing the job that I was elected to do with an overwhelming majority, which is representing the people of Hampstead and Highgate.
“So they need to stop this political vendetta, this smear campaign, and this malicious persecution right from the beginning.”
The MP had requested a meeting with the Bangladeshi leader during an official visit to the UK earlier this month to “clear up” any misunderstandings.
But this was turned down by the chief adviser, who said he did not want to “interrupt a legal procedure”.
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MP says arrest warrant is ‘smear campaign’
In the new legal letter, lawyers for Ms Siddiq say the interim leader had already unfairly influenced the inquiries through previous comments.
“The copious briefings to the media, the failure to respond to our letters, the failure to even ask to meet with and question Ms Siddiq during their recent visit to the United Kingdom are impossible to justify and completely inconsistent with a fair, lawful and serious investigation,” reads the letter.
The correspondence also sets a deadline of 30 June 2025 for the Bangladeshi authorities to reply by, stating that “in the absence of a full and proper response… Ms Siddiq will consider this matter closed”.
A former Nobel Prize winning economist, Professor Muhammad Yunus became interim leader of Bangladesh last August after weeks of deadly protests forced Sheikh Hasina from power.
He has pledged to root out corruption and recover alleged stolen wealth before holding votes to elect a permanent administration.
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Tulip Siddiq questioned over Bangladesh corruption
Last month, Professor Yunus banned the Awami League – the political party still led by Sheikh Hasina – from standing in the coming elections.
That led to criticism from those still loyal to the former prime minister, with protests also sparking in the country over jobs, pay and planned reforms.
Earlier this year, it was revealed that Tulip Siddiq had lived in several London properties that had links back to the Awami League.
She referred herself to the prime minister’s standards adviser Sir Laurie Magnus who said he had “not identified evidence of improprieties” but added it was “regrettable” Ms Siddiq had not been more alert to the “potential reputational risks” of the ties to her aunt.
Ms Siddiq said continuing in her role would be “a distraction” for the government but insisted she had done nothing wrong.
Sheikh Hasina is currently standing trial in absentia in Dhaka over alleged killings during last summer’s civil unrest.
Asked by Sky News if she had any regrets about links to the Awami league, Ms Siddiq said: “The main thing I would say to you, I’m very proud to be the MP for Hampstead and Highgate. I was born in London, I grew up in London. I went to school here and now I’m an MP here.”
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Sheikh Hasina pictured in 2023. Pic: AP/Yomiuri Shimbun
In March, Sky News revealed that UK investigators could assist with probes into alleged grand corruption during Hasina’s time in power.
Staff from the National Crime Agency visited Bangladesh in October and November as part of initial work to support the interim government in the country.
Last month, the NCA confirmed it had secured a “freezing order” against a property in north London linked to Ms Siddiq’s family.
She denies all the allegations – and sources close to the MP say the authorities have been sending correspondence to an address in Dhaka that has no connection with her.
A “rapid” national investigation into NHS maternity services has been launched by the government.
The announcement comes after Health Secretary Wes Streeting met families who have lost babies and amid the ongoing investigations at some NHS trusts into maternity care failings.
The investigation in England is intended to provide truth to families suffering harm, as well as driving urgent improvements to care and safety, as part of efforts to ensure “no parent or baby is ever let down again”.
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The Royal College of Midwives (RCM) welcomed the government’s announcement and said maternity services were “at, or even beyond, breaking point”.
Last week, the NHS regulator said maternity and neonatal services at two Leeds hospitals had been rated inadequate over safety issues.
Mr Streeting, who was speaking at the Royal College of Obstetricians and Gynaecologists (RCOG) conference in London, apologised on behalf of the NHS for what families had been through and said it was “clear something is going wrong”.
He added: “For the past year, I have been meeting bereaved families from across the country who have lost babies or suffered serious harm during what should have been the most joyful time in their lives.
“What they have experienced is devastating – deeply painful stories of trauma, loss, and a lack of basic compassion – caused by failures in NHS maternity care that should never have happened.
“Their bravery in speaking out has made it clear: we must act – and we must act now.”
Mr Streeting said families have had to “fight for truth and justice” and had described being “ignored, gaslit, lied to, manipulated and damaged further by the inability for a trust to simply be honest with them that something has gone wrong”.
The investigation will consist of two parts.
Wes Streeting speaking during the RCOG conference. Pic: PA
The first will investigate up to 10 of the most concerning maternity and neonatal units, including Sussex, in the coming weeks to give affected families answers as quickly as possible, according to the Department of Health.
The second will be a “system-wide” look at maternity and neonatal care, uniting lessons from past inquiries to create one clear set of actions designed to improve NHS care.
A National Maternity and Neonatal Taskforce will be chaired by Mr Streeting and made up of experts and bereaved families.
The investigation will begin this summer and report back by December.
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Sir Jim Mackey, chief executive of NHS England, said: “This rapid national investigation must mark a line in the sand for maternity care – setting out one set of clear actions for NHS leaders to ensure high quality care for all.”
Dr Ranee Thakar, president of the RCOG, said: “The maternity workforce is on its knees, with many now leaving the profession.”
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RCM chief executive Gill Walton said: “Everyone involved in maternity services – the midwifery community, obstetricians, anaesthetists, sonographers and, of course, the women and families in their care – knows that maternity services are at, or even beyond, breaking point.
“This renewed focus and commitment by the health secretary to deliver change is welcome, and we will do everything we can to support him in doing so.”
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