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.
Image: 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.
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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.
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“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.
Image: 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.
Image: 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.”
Image: 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.
Image: 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.
Image: 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.
Image: 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.”
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Donald Trump may be denied the honour of addressing parliament on his state visit to the UK later this year, with no formal request yet submitted for him to be given that privilege.
Sky News has been told the Speaker of the House of Commons, Sir Lindsay Hoyle, hasn’t so far received a request to invite the US president to speak in parliament when he is expected to visit in September.
It was confirmed to MPs who have raised concerns about the US president being allowed to address both houses.
Kate Osborne, Labour MP for Jarrow and Gateshead East, wrote to the speaker in April asking him to stop Mr Trump from addressing parliament, and tabled an early-day motion outlining her concerns.
“I was happy to see Macron here but feel very differently about Trump,” she said.
“Trump has made some very uncomfortable and worrying comments around the UK government, democracy, the Middle East, particularly around equalities and, of course, Ukraine.
“So, I think there are many reasons why, when we’re looking at a state visit, we should be looking at why they’re being afforded that privilege. Because, of course, it is a privilege for somebody to come and address both of the houses.”
But the timing of the visit may mean that any diplomatic sensitivities, or perceptions of a snub, could be avoided.
Image: France’s President Emmanuel Macron addressed parliament during his state visit this month
Lord Ricketts, a former UK ambassador to France, pointed out that parliament isn’t sitting for much of September, and that could help resolve the issue.
In 2017, he wrote a public letter questioning the decision to give Donald Trump his first state visit, saying it put Queen Elizabeth II in a “very difficult position”.
Parliament rises from 16 September until 13 October due to party conferences.
The dates for the state visit haven’t yet been confirmed by Buckingham Palace or the government.
However, they have not denied that it will take place in September, after Mr Trump appeared to confirm they were planning to hold the state visit that month. The palace confirmed this week that the formal planning for his arrival had begun.
Image: Mr Trump has said he believes the trip to the UK will take place in September. Pic: Reuters
When asked about parliamentary recess potentially solving the issue, Ms Osborne said: “It may be a way of dealing with it in a very diplomatic way… I don’t know how much control we have over Trump’s diary.
“But if we can manoeuvre it in a way that means that the House isn’t sitting, then that seems like a good solution, maybe not perfect, because I’d actually like him to know that he’s not welcome.”
A message from the speaker’s office, seen by Sky News, says: “Formal addresses to both Houses of Parliament are not automatically included in the itinerary of such a state visit.
“Whether a foreign head of state addresses parliament, during a state visit or otherwise, is part of the planning decisions.”
Image: Mr Trump made his first state visit to the UK in June 2019 during his first presidency. File pic: Reuters
It’s understood that if the government agrees to a joint address to parliament, the Lord Chamberlain’s office writes to the two speakers, on behalf of the King, to ask them to host this.
It will be Mr Trump’s second state visit.
During his first, in 2019, he didn’t address parliament, despite the fact that his predecessor, Barack Obama, was asked to do so.
It was unclear if this was due to the fact John Bercow, the speaker at the time, made it clear he wasn’t welcome to do so.
However, it didn’t appear to dampen Mr Trump’s excitement about his time with the Royal Family.
Speaking earlier this year, he described his state visit as “a fest” adding “it’s an honour… I’m a friend of Charles, I have great respect for King Charles and the family, William; we have really just a great respect for the family. And I think they’re setting a date for September.”
It is expected that, like Mr Macron, the pageantry for his trip this time will revolve around Windsor, with refurbishment taking place at Buckingham Palace.
Fuel to the engines of the Air India plane that crashed last month appears to have cut off shortly after take-off, a preliminary report has found.
According to the report switches in the cockpit that controlled fuel moved to a “CUTOFF” position.
It said: “Engine 1 and Engine 2 fuel cutoff switches transitioned from RUN to CUTOFF position one after another with a time gap of one second.
“The Engine N1 and N2 began to decrease from their take-off values as the fuel supply to the engines was cut off.”
Image: The crash site. Pic: AAIB
There was then confusion in the cockpit. In the voice recording, one of the pilots is heard asking the other why he “cut off”. The other pilot responds that he did not do so.
There were no conclusions as to how the switches were moved.
One of the engines was able to be restarted, but could not reverse the plane’s deceleration, the report found.
“At this stage of investigation, there are no recommended actions to Boeing 787-8 and/or GE GEnx-1B engine operators and manufacturers,” India’s Aircraft Accident Investigation Bureau (AAIB) said in the report.
Image: A diagram in the report shows how the plane crashed into a building. Pic: AAIB
No significant bird activity was observed in the vicinity of the plane’s flight path, the report said. The aircraft started to lose altitude before crossing the airport perimeter wall, it added.
The plane plummeted into a busy area, killing 241 passengers and 19 others on the ground while incinerating everything around it.
The AAIB’s report is based on the initial findings of the probe, marking 30 days since the crash.
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Liverpool have retired the number 20 shirt in honour of Diogo Jota – the first time it has made such a gesture.
The club said it was a “unique tribute to a uniquely wonderful person” and the decision was made in consultation with his wife and family.
The number 20 will be retired at all levels, including the men’s and women’s first teams and academy squads.
A statement said: “It was the number he wore with pride and distinction, leading us to countless victories in the process – and Diogo Jota will forever be Liverpool Football Club’s number 20.”
The club called it a “recognition of not only the immeasurable contribution our lad from Portugal made to the Reds’ on-pitch successes over the last five years, but also the profound personal impact he had on his teammates, colleagues and supporters and the everlasting connections he built with them”.
Image: Jota’s wife joined Liverpool players to view tributes at Anfield on Friday. Pic: Liverpool FC
Image: Pic: Liverpool FC
Newly-married Jota died alongside his brother when his Lamborghini crashed in northern Spain on 3 July.