Anyone who has been a working parent will know the sense of dread that often accompanies having to call your boss to tell them your child is too poorly to attend nursery, school or their usual childcare provider, and while many companies allow a certain amount of parental leave per year, it can still be a huge stress and worry.
But when the very worst happens, and your child is diagnosed with a long-term illness, the financial implications can be devastating, creating a whirlwind of worry and anxiety at an already incredibly difficult time. There’s an estimated 1.7 million children in the UK struggling with long-term conditions like asthma, diabetes and epilepsy and almost 50,000 children under the age of 18 are living with life-limiting and life-threatening conditions.
And with no safeguards in place to protect parents' jobs, and a third of UK adults having no savings, making ends meet can prove almost impossible. We spoke to Christina Harris, 45, from Rayleigh, Essex. She's a single mum to her son, 14, and her daughter, Skye, 12. This is her story...
"When a medical professional sits you down and tells you your child is gravely ill, a lot of things go through your mind. How are you going to break the news to them? How are you going to comfort them and how much pain will they be in? Ultimately, the biggest question is always, will they survive? And as a parent, the very real chance of losing your child is without a doubt one of the worst things you will ever face.
A fear I certainly didn’t anticipate was the one I was faced with just a few weeks after my daughter was diagnosed with Leukaemia -am I going to lose our home?
"But a fear I certainly didn’t anticipate was the one I was faced with just a few weeks after my daughter, Skye, then 10, was diagnosed with Acute Lymphoblastic Leukaemia, a rare and aggressive blood cancer. Am I going to lose our home? How am I going to buy food and pay our bills?
"In January 2022, just weeks after we’d made the terrible discovery and Skye was in and out of Great Ormond Street Hospital having her first round of chemotherapy, lying pale and nauseous on our sofa, her long brown hair already falling out, my employer of 19 years, a local estate agent, called and said that although they could keep my position as a sales negotiator open, they could no longer pay me. My last paycheck had been paid at the end of December, and that, as far as they were concerned, was that.
"I begged them to let me work when I could from home, and while caring for Skye was a full-time job, I would have worked late into the night if it meant I could have kept my salary. But until I could resume my role working full time in the office, that was the end of the discussion.
"A new kind of panic quickly set in, one that was hard to reckon with when I’d already been stunned by Skye’s devastating diagnosis. I was a single mum to Skye and her older brother, then 12, and I had no-one else to rely on. A week later, after driving a poorly Skye into hospital, the staff put me in touch with one of their on site social workers, who explained I was unable to apply for any benefits until three months after the diagnosis. I sobbed, wondering how I’d pay the bills that had already started to mount up on the kitchen table if I couldn’t even apply for financial help until March.
"I did my best to push these thoughts from my mind and while my son stayed with his dad, I never left Skye’s side and was with her a few days later when I gently used the word cancer in front of her for the first time.
I was unable to apply for any benefits until three months after the diagnosis. I sobbed, wondering how I’d pay the bills
"Wrapping her in my arms as she cried in fear, I promised her everything was going to be OK. That week, I confided in a close friend, breaking down as I admitted I was afraid of how I’d cope financially and she offered to help by setting up a Go Fund Me page called ‘Keep Skye Smiling’.
"At first, I hated the thought of asking people for money. I’d never asked anyone for financial help before, especially not strangers, but over the next weeks I was overwhelmed as so many generous people donated to the fund, meaning that until I could claim Universal Credit, I was able to cover the cost of my mortgage and expenses, even having enough left over for trips to the garden centre with Skye on her good days to get some plants and seeds for her beloved herb and vegetable garden.
"Sharing a message of thanks to our supporters on the site in March, I closed the fund. That same month, I was able to claim some of what I was entitled to, but it took another six months to receive disability allowance for Skye and carers allowance. Meanwhile, Skye was so brave, never once complaining despite the endless rounds of chemo and medication. In September 2022, she moved on to daily chemo tablets which she took at home, but we were still in and out of hospital with even a common cold having a disastrous impact on her health.
"In January 2023, my employer officially ended my employment contract even though I tried my hardest to hold on to it. Ultimately I just couldn’t commit to working four days in the office with Skye rarely able to attend school more than a few days at a time and constant hospital appointments taking up so much of our time. Skye, now 12, is due to complete her treatment at the end of March, and we both can’t wait to hear she’s finally in remission - she has been so brave and I’m incredibly proud of her.
"Last year I started a petition to put more safeguards in place to protect people’s jobs when their child becomes ill and not only did I quickly get 100,000 signatures, I was inundated with parents in similar situations. People who find themselves unable to work in order to care for their ill children should not have to suffer anymore than they already are. In November 2023, I handed the petition to the Prime Minister and it’s due to be debated in parliament this year. If I can prevent other people from going through what I did then the hard work will have been worth it."
For support and advice on help available from the government and charities when caring for a sick child visit: turn2us.org.uk
Disclaimer
This feature was originally published in April 2024 in Woman magazine, which is also owned by Future Publishing.
