When Emma’s three-year-old son was diagnosed with a brain tumor, money was the last thing on her mind.
With the tumor wrapped around his optic nerve – meaning it can never be removed – the kind and sociable toddler will need intermittent treatment 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 grueling chemotherapy, the family now faces the harsh reality of coping with Seb’s cancer against a backdrop of rising costs of living and ever-decreasing household incomes.
“At first you think the diagnosis is emotionally horrifying, but then it hits you, financially, how do we make it work?” said Emma Grimwood-Bird.
The cost of childhood cancer
Charity Young Lives Vs Cancer estimates that cancer in children and young people is costing families an extra £730 a month.
Seb is fed through a feeding tube, but he is allergic to the hospital food solution. The family must therefore buy him high-calorie foods that are easy to mix.
“I noticed the other day that something that used to cost me £8 – a cream and salmon – went down to £9.95,” Emma said.
“We’re probably spending an extra £30 or £40 a week on what he needs.
“For the first time, I have to take things out of the basket and adapt to his nutritional needs.
“Which we’re happy to do, but it’s not something we’ve ever had to do before.”
‘How are we going to manage?’
The family also face a £300-a-month increase on their mortgage in January, as well as an electricity bill that has nearly doubled from £120 to £217.
“We know our mortgage is going up, but when we get into January we don’t know how it’s going to be. I think we just put our heads in the sand and say, ‘We’re going to manage, we’re going to make it happen’ .
“But now we’re getting to the point where we’re thinking, how are we going to manage?”
While Seb is stable at the moment, she said “the fear is still there” that he might get sicker, and that she or her husband will have to leave work to care for him.
Emma has already exhausted her sick pay, meaning any additional leave is unpaid.
“I thought there would be some sort of support if you couldn’t work anymore if your child was sick. But there’s no protection at all.
“We have tried very hard to keep our employers on our side, but there is only so far they will go.”
They receive Disability Living Allowance of £300 a month, which roughly covers the cost of the extra car they need to take Seb to his appointments – at a hospital an hour’s drive away.
“I never thought I would be someone who would get benefits,” she said.
“But we didn’t ask that of our son having a brain tumor and while you’re dealing with the emotional aspect, you also have to have financial conversations.”
Rachel Kirby-Rider, CEO 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 dealing with the uncontrollable costs of cancer on top of the fear that a diagnosis of cancer brings.
“They have to make impossible choices, deciding between turning on the heat to keep their child warm or paying for gas to get to the hospital for treatment; getting the food their child desperately needs during chemotherapy or buying a warm coat.”
The charity has set up a crisis fund, providing grants to families and young people most in need this winter, as well as offering emotional support.
Less than 100 cases per year
For Katherine Lichten, from Suffolk, it’s a familiar story.
Their “whole world was turned upside down” when three-year-old Teddy, initially worried that he might need surgery for appendicitis, turned out to have a cancerous mass that had metastasized to his hips, spine and his bone marrow.
Teddy’s cancer is rare – there are fewer than 100 cases a year in the UK and only 40% of those diagnosed survive five years.
The train-obsessed little boy – whose favorite 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 medicine it is – you can’t get anything from him.”
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 child benefit of £140 a month,” she said.
As their income falls, their costs rise, including their mortgage, which is now increasing by £200 a month.
“Our budget for food has stayed the same, but every week we’re getting less and less for our money,” she said.
“It’s very difficult to go shopping when you have a seriously ill child.”
Teddy also requires multiple hospital visits, costing the family £12 a day on public transport, or £30 each way if they need to take a more urgent taxi.
The family is raising money for medical treatment abroad, hoping to get him specialized treatment in the United States.
But the weakening of the pound against the dollar means they need to raise even more to succeed.
It’s never you
The lack of support for parents of children with cancer is what prompted Ceri Menai-Davis to start her charity, It’s Never You.
Her six-year-old son Hugh died of 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 to those “on the brink”.
Currently, parents can apply for Universal Credit (if they don’t have more than a certain amount of savings or employment), Disability Living Allowance, Carer’s Allowance and 18 weeks of unpaid leave. balance taken in four-week increments throughout the year.
“You are constantly fighting against this stunt,” he said.
“I’m on the other side now – the sad side – but the stress, and then I don’t have any extra money.
“Having been there, I know the cost of everything and what you want to do for your child.
“The three things we need to do to take care of our child is feed him, keep him warm and get him to the hospital. And those three key things have gone up in price by at least 20% And for some parents there is no support, so it adds an extra burden to an already terrible time.”
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