Exclusive:
Imagine having to chose between going to work and being by your child’s bedside because there is no financial help available for working parents of seriously ill children
When Alice and Mark Atterton discovered their five-year-old son Bodhi had cancer their lives changed in the blink of an eye.
One minute, their mischievous young son was laughing with his friends, the next he was lying in a hospital bed wired up to machines as doctors fought to save his life.
Devoted parents Alice and Mark, both 39, from Taunton spent weeks by their son’s hospital bed but – and just when they thought things couldn’t get any worse – Mark was forced to go back to work amid fears they could lose their home.
In an exclusive chat with The Mirror, mum Alice says. “Being told your child has cancer is indescribably painful. It’s not a cliché to say that your world stops turning for a little bit. It was during October half-term 2022 when he first complained of a sore throat but within days he was rushed to hospital and we were told he had cancer – it all happened so quickly. Your only focus becomes your child’s health – now imagine not being able to be by your child’s bedside for that.”
Bodhi was diagnosed with T cell acute lymphoblastic leukaemia – a fast-growing type of blood cancer that affects the bone marrow, blood and other tissues. All Alice and Mark wanted was to focus on Bodhi and their other children – Toni-Joina (now 18), Noah (now 14) Evie May (now 12) and Thea (now 3). But while Alice, a primary school teacher, was able to take a year off work, her husband Mark was forced to continue working to pay the bills.
“My husband is a self-employed builder which meant that to be by Bodhi’s side meant no pay for him. Often he had to go to work so that we had money coming in. I was still getting paid but half of our income was gone if Mark didn’t work. The cancer diagnosis hit us out of the blue so we weren’t prepared financially for what happened to us.
“On top of worrying about whether Bodhi would pull through – we were worried about losing the roof over our heads – it was awful. I still feel angry about it. And while that ship has sailed for us, we don’t want other parents to have to go through what we went through.”
Four children are diagnosed with cancer every day in the UK – but working parents aren’t offered any financial support until after three months when they can apply for Disability Living Allowance. It then typically takes another three months after that before families receive any money in their pockets. And as Alice and Mark were being forced to rely on half their usual income, their every day costs spiralled.
“Our outgoings spiked dramatically with extra money being spent on more childcare for our other children and food and resources at the hospital,” Alice adds. “It took a huge financial and psychological toll on us. Had there been a relief fund, as Hugh’s Law proposes, then we could have focussed on the only thing that mattered, being there for Bodhi instead of stressing about haemorrhaging money. And we were the lucky ones – we know people who’ve lost their houses, their savings. In the first three months (the period of help that Hugh’s Law is proposing support for) we easily lost £5,000, possibly more.”
Alice and Mark aren’t the only parents who were shocked to discover the lack of support for parents of children in hospital. Thankfully, Bodhi finished his cancer treatment at the end of November 2024 but that doesn’t stop Alice feeling angry that there is no financial support in place for parents like them. “Never in a million years did we expect this to happen to us. Hugh’s Law being in place would have such a significant impact on families like ours,” Alice adds. “It quite literally gives you a lifeline to be able to plough all of your energy and focus into helping your child survive.
“Two years on and we’re still playing catch-up financially. We had to wriggle things around, borrow and rely on the generosity of friends and family but not everyone is in that position. It’s frustrating that things can’t seem to move faster in parliament when there is an immediate need for this law.
“In another six months’ time around 2000 families will have found themselves in our position without that financial support. That said, we will not be deterred. This isn’t going to go away and neither are we. Ceri and Frances haven’t wavered once in their determination to see this through so, as fellow cancer parents, we will be right there with them all the way to the finish line.”
You can sign the petition here: https://chng.it/2BDDVzj9cN
