‘The bottom fell out of our world’ – coping with childhood cancer in a cost of living crisis
When Emma’s three-year-old son was diagnosed with a brain tumour, money was the last thing on her mind.
With the tumour wrapped around his optic nerve – meaning it can never be removed – the kind and sociable toddler will need treatment on and off for the next 18 years of his life.
“The bottom just fell out of our world, we thought we were never going to be happy again,” she told Sky News.
After 18 months of gruelling chemotherapy, the family now face the stark reality of coping with Seb’s cancer amid a rising cost of living and an ever-diminishing household income.
“Initially you think the diagnosis is horrendous emotionally but then it hits you, financially how do we make this work?” Emma Grimwood-Bird said.
Seb, with mum Emma
The cost of cancer in children
Charity Young Lives Vs Cancer estimates cancer in children and young people costs families an extra £730 a month.
Seb is fed using a feeding tube but is allergic to the hospital’s feed solution, so the family have to buy him high-calorie food that is easily blendable.
“I noticed the other day that something that used to cost me £8 – a cream and salmon thing – has gone up to £9.95,” Emma said.
“We probably spend an extra £30 or £40 a week on what he needs.
“For the first time, I am having to take things out of the basket and accommodate the rest of us around his nutritional needs.
“Which we are happy to do but it’s not something we have ever had to do before.”
‘How are we going to manage?’
The family also face a £300-a-month increase on their mortgage come January, as well as an electricity bill that has almost doubled, rising from £120 to £217.
“We know our mortgage is going up, but when we get to January we are not sure how it’s going to play out. I think we’re just putting our heads in the sand and saying, ‘We’ll manage, we’ll manage’.
“But now it’s getting to the point where we are thinking, how are we going to manage?”
While Seb is stable at the moment, she said the “fear is always there” that he may get sicker, and either she or her husband will have to leave their job to care for him.
Emma has already used up her allotted sick pay, meaning any additional time off is unpaid.
Seb, with his family – including his younger brother Will
“I thought there would be some sort of support if you can no longer work if your child is sick. But there is no protection at all.
“We have really tried to keep our employers on side, but there is only so far they will go. “
They get £300-a-month disability living allowance, which just about covers the cost of the additional car they need to take Seb to his appointments – at a hospital an hour away.
“I never have I thought about I would be someone that would receive benefits ever,” she said.
“But we didn’t ask that for our son to get a brain tumour and as much as you are dealing with the emotional side of it, you have to have the financial conversations as well.”
Rachel Kirby-Rider, chief executive of Young Lives vs Cancer, said: “We are witnessing the worst cost of living crisis we have seen in recent memory, and the young cancer patients and families we support are having to deal with the uncontrollable costs of cancer alongside the fear a cancer diagnosis brings.
“They are left having to make impossible choices, deciding between putting the heating on to keep their child warm or paying for petrol to get to hospital for treatment; getting the food their child desperately craves while on chemotherapy or buying a warm coat.”
The charity has introduced a crisis fund, offering grants to families and young people in greatest need this winter, alongside offering emotional support.
Seb, with mum Emma, in hospital
Less than 100 cases a year
For Katherine Lichten, from Suffolk, it’s a familiar story.
Their “whole world was turned upside down” when three-year-old Teddy, feared initially to need surgery for appendicitis, was found to have a cancerous mass which had metastasised on his hips, spine and bone marrow.
Teddy’s cancer is rare – there are less than 100 cases a year in the UK and only 40% of those diagnosed survive five years.
The train-obsessed little boy – whose favourite thing to do is go to the local station and spot the engines – has now been isolated from his friends due to infection concerns.
Katherine said: “He’s very curious, he likes to know what’s going on, and he likes to ask the nurses what medication it is – you can’t get anything by him.”
Teddy, post diagnosis
Unable to return to work
Katherine was due to return to work in January at the end of her maternity leave for Teddy’s eight-month-old brother Rupert.
But because of Teddy’s cancer, she won’t be able to go back until this time next year.
“My only income is £140-a-month child benefit,” she said.
As their income goes down, their costs have gone up – including their mortgage, which is now up £200 a month.
“Our budget for food has stayed the same but every week we are getting less and less for our money,” she said.
Teddy, three, at the start of treatment
“It’s very difficult to do food shopping when you have got a child who is seriously ill.”
Teddy also requires multiple hospital visits, which costs the family £12 a day on public transport, or £30 per journey if they need to take a more urgent taxi.
The family is fundraising for medical treatment abroad, hoping to get him specialised treatment in the US.
But the weakening of the pound against the dollar means they need to raise even more to be successful.
Teddy with mum Katherine, and younger brother Rupert
It’s Never You
The lack of support for parents of children with cancer is what spurred Ceri Menai-Davis to set up his charity, It’s Never You.
His six-year-old son, Hugh, died from a rare form of cancer in September last year.
He said parents are forced to rely heavily on charities – including his own, which has an app to provide advice for those “at the coalface”.
Currently, parents can claim universal credit (if they don’t have above a certain amount in savings or a job), disability living allowance, carers allowance and 18 weeks unpaid leave taken in four-week chunks across the year.
Hugh inspired his parents to set up a charity to give support to parents
“You are constantly fighting against this waterfall,” he said.
“I’m now the other side of it – the sad side of it – but the stress of it, and then having no money on top.
“Having been there, I know the cost of everything and what you want to do for your child.
“The three things we have to do to look after our child is to feed them, heat them and take them to hospital. And those three key elements have gone up in price by at least 20%. And for some parents, there is no support, so it’s adding an extra burden to an already awful time.”
Sir Keir Starmer has joined other European leaders in Kyiv to press Russia to agree an unconditional 30-day ceasefire.
The prime minister is attending the summit alongside French President Emmanuel Macron, recently-elected German Chancellor Friedrich Merz and Polish Prime Minister Donald Tusk.
It is the first time the leaders of the four countries have travelled to Ukraine at the same time – arriving in the capital by train – with their meeting hosted by President Volodymyr Zelenskyy.
Sir Keir Starmer, Emmanuel Macron and Friedrich Merz travelling in the saloon car of a special train to Kyiv. Pic: Reuters
Leaders arrive in Kyiv by train. Pic: PA
It comes after Donald Trump called for “ideally” a 30-day ceasefire between Kyiv and Moscow, and warned that if any pause in the fighting is not respected “the US and its partners will impose further sanctions”.
Security and defence analyst Michael Clarke told Sky News presenter Samantha Washington the European leaders are “rowing in behind” the US president, who referred to his “European allies” for the first time in this context in a post on his Truth Social platform.
“So this meeting is all about heaping pressure on the Russians to go along with the American proposal,” he said.
“It’s the closest the Europeans and the US have been for about three months on this issue.”
Sir Keir Starmer, Volodymyr Zelenskyy and Emmanuel Macron among world leaders in Kyiv. Pic: AP
Trump calls for ceasefire. Pic: Truth Social
Ukraine’s foreign minister Andrii Sybiha said Ukraine and its allies are ready for a “full, unconditional ceasefire” for at least 30 days starting on Monday.
Ahead of the meeting on Saturday, Sir Keir, Mr Macron, Mr Tusk and Mr Merz released a joint statement.
European leaders show solidarity – but await Trump’s backing
The hope is Russia’s unilateral ceasefire, such as it’s worth, can be extended for a month to give peace a chance.
But ahead of the meeting, Ukrainian sources told Sky News they are still waiting for President Donald Trump to put his full weight behind the idea.
The US leader has said a 30-day ceasefire would be ideal, but has shown no willingness yet for putting pressure on Russian president Vladimir Putin to agree.
The Russians say a ceasefire can only come after a peace deal can be reached.
European allies are still putting their hopes in a negotiated end to the war despite Moscow’s intransigence and President Trump’s apparent one-sided approach favouring Russia.
Ukrainians would prefer to be given enough economic and military support to secure victory.
But in over three years, despite its massive economic superiority to Russia and its access to more advanced military technology, Europe has not found the political will to give Kyiv the means to win.
Until they do, Vladimir Putin may decide it is still worth pursuing this war despite its massive cost in men and materiel on both sides.
“We reiterate our backing for President Trump’s calls for a peace deal and call on Russia to stop obstructing efforts to secure an enduring peace,” they said.
“Alongside the US, we call on Russia to agree a full and unconditional 30-day ceasefire to create the space for talks on a just and lasting peace.”
Sir Keir and Volodymyr Zelenskyy during a meeting in March. Pic: AP
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Putin’s Victory Day parade explained
The leaders said they were “ready to support peace talks as soon as possible”.
But they warned that they would continue to “ratchet up pressure on Russia’s war machine” until Moscow agrees to a lasting ceasefire.
“We are clear the bloodshed must end, Russia must stop its illegal invasion, and Ukraine must be able to prosper as a safe, secure and sovereign nation within its internationally recognised borders for generations to come,” their statement added.
“We will continue to increase our support for Ukraine.”
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The European leaders are set to visit the Maidan, a central square in Ukraine’s capital where flags represent those who died in the war.
They are also expected to host a virtual meeting for other leaders in the “coalition of the willing” to update them on progress towards a peacekeeping force.
Military officers from around 30 countries have been involved in drawing up plans for a coalition, which would provide a peacekeeping force in the event of a ceasefire being agreed between Russia and Ukraine.
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This force “would help regenerate Ukraine’s armed forces after any peace deal and strengthen confidence in any future peace”, according to Number 10.
A special constable has been jailed after taking pictures on his phone from bodycam footage showing a dying man.
Former police volunteer William Heggs, 23, was sentenced to 12 months’ imprisonment at Leicester Crown Court on Friday after showing the photos of victim William Harty, 28, to a female colleague and storing them on his Snapchat account.
Mr Harty was found seriously injured in a residential street in Leicester on 25 October 2021 and Heggs had attended the scene, helping with CPR before paramedics arrived.
Mr Harty died in hospital a day later and the man responsible for his injuries, his brother-in-law Martin Casey, was subsequently convicted of his manslaughter.
Heggs showed the pictures he had taken of bodycam footage of Mr Harty’s body to a Leicestershire Police constable, who reported Heggs and said she did not like seeing blood.
His phone was seized and officers discovered other photographs and video clips of bodyworn footage of incidents Heggs had attended on duty, including of a knife seizure, use of baton and pepper spray, and a man with an injured hand receiving first aid.
He also took pictures of a police computer screen, showing details of crimes and suspects, without consent.
Heggs stored the materials in a Snapchat folder and disclosed graphic details – most of which were not in the public domain – about the injuries to a woman who was killed in a road traffic collision he had attended, to a friend on the social media platform.
Heggs was suspended from the force in November 2021 and resigned in October 2024 before pleading guilty to 11 computer misuse and data protection offences this March.
William Harty’s widow Mandy Casey. Pic: PA
‘He has traumatised me’
Mr Harty’s widow, Mandy Casey, said in a victim impact statement read to the court that Heggs “took (her) husband’s dignity when he was most vulnerable”.
“You don’t take someone’s dignity and pride from them on their deathbed.”
She continued: “When I found out special constable Heggs had done this, I just wanted to ask why. He has traumatised me. I feel I will never know if he showed them to others.”
Ms Casey said she was still scared that photos of her husband’s body might appear on social media.
She added that she had lost trust in the police.
Public trust in police ‘significantly undermined’
Judge Timothy Spencer told Heggs, who has autism and ADHD, that he was “probably too immature to be working as a police officer” as he handed down the sentence.
He said Heggs had received “extensive training”, including on the importance of data protection, and knew he should only share materials for “a genuine policing purpose”.
Heggs’s actions had “significantly undermined” public trust and confidence in police, according to the judge.
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Malcolm McHaffie, from the Crown Prosecution Service, added: “William Heggs abused the public’s trust in the office he held as a special police constable.
“He violated the dignity of the deceased victims for no apparent reason other than what could be considered personal fascination and to gain credibility among his peers.”
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