Skye took the news of her diagnosis surprisingly well. She looked at it as something we just needed to get through, and tried to focus on the positives in this nightmare situation we found ourselves in. She was my rock, and I was hers.
We’d been on the Elephant ward at Great Ormond Street for a few days when I received a call from my manager. He told me not to worry about work and that the owners had said that they’d do everything they could to support us. I hadn’t spent much time worrying about work, but it was nice to know. It was reassuring.
Eleven days later, we were discharged from hospital and left with a huge bag of steroids, anti-sickness medicine, morphine and loads of other medications that I’d never even heard off. This was our new life and there was a lot to adjust to.
After spending most of Christmas and New Year in hospital, I received a call from a lady in my work’s HR department. She informed me that I wouldn’t be receiving any further wages from my company and if I wanted to take time off to care for my daughter, it would be unpaid. I couldn’t believe it. There was no help towards the situation we were in, and I now had no way of paying any of my bills at the end of January.
There was no law, no protection in place to safeguard a parent’s job if you chose to care for your seriously ill child.
I broke down crying. I was a single mother, with a seriously ill daughter and a 12-year-old son who’d just been thrown into a world of devastation and left with no income whatsoever. I couldn’t apply for disability living allowance until three months after diagnosis, so that wasn’t an option. I spent many evenings contacting charities asking for help. I spoke to Universal Credit the following month and I qualified for some help, but my bills exceeded all help available.
I was helped by with a GoFundMe fundraiser which my friend kindly arranged. I couldn’t have done it without the generosity of friends, family and complete strangers with kind hearts.
Employers push for my return
Six months went by, and my employer scheduled a meeting over the phone, as we were isolating due to Skye’s immune system being extremely low. They asked if I was able to return to work, but with Skye still in the intense part of treatment, and with constant hospital admissions, it would have been impossible. I mentioned I’d be happy to do some work from home but was told this wasn’t an option. He also mentioned that he wouldn’t be able to hold my position open for much longer. He scheduled another meeting for January 2023.
Skye’s treatment was going to plan and by March 2022, we were told that all cancer cells were undetectable. This was a huge relief, but treatment wasn’t done. She still had two years left of chemotherapy. There were a lot of setbacks, including blood infections and countless hospital admissions due to side effects of chemo. One infection was so bad, she was in hospital for a month during the summer holidays. She had all her baby teeth removed at the same time due to chemotherapy destroying them, right down to the nerve. It was one thing after another, but she never complained, not once. She was positive and loving her life, despite it all. She loved staying in hospital and the nurses coming to our house, she was full of life and was living hers, as if nothing was wrong. I was in awe of her, every single day.
Skye with her brother, Marley
Being told I had no longer had a job
The scheduled call from my employer happened, and it went exactly as I anticipated. I was told that unless I could commit to my previous working hours, then I wouldn’t be able to return to my role. I knew I couldn’t commit. Skye still had a year-and-a-half left of treatment and was still spending a lot of time in hospital. I asked if I was able to work from home on occasions and come into the office on the days Skye was well enough to go to school or maybe work reduced hours. I was very willing to be as flexible as they needed me to be. But there was no flexibility. I was told that none of those options would work for the company. So that was it. I lost my job.
Although I had a feeling this was coming, it hit me hard. I now had no financial security for my family and my stress levels had reached an all-time high. I was angry and shocked. I couldn’t believe this was even legal. But, after doing a lot of research, I found out that it was. There was no law, no protection in place to safeguard a parent’s job if you chose to care for your seriously ill child. Employers can support you all the way throughout this whole journey, should they wish to. They can offer flexible working hours, working remotely, support the emotional and physical wellbeing of you and your family, be compassionate. They can also make the inhumane decision to fire you, should they wish. Although I couldn’t quite get my head around this huge flaw in our system, I had a sick daughter to look after. I knew I needed to address the issue, but this wasn’t the time.
Campaigning for better rights for families
In June 2023, I decided to start a petition to Parliament to offer career breaks for parents of seriously ill children. I simply couldn’t let this happen to another family.
The injustice in our system had to be corrected. I had six months to collect 100,000 signatures. This was a huge task, probably bigger than I anticipated. I spent several hours every single day and evening sharing the petition far and wide, reaching 100,000 signatures four months after launching it. I felt a sense of achievement and I was so pleased to be a step closer to a possible debate in Parliament. But there were no guarantees. Early in November 2023, I delivered my 100,000 signatures to the Prime Minister at 10 Downing Street. Months went by and with the general election coming up, my scheduled debate was put on hold due to the change of government. I knew that my petition might be eligible for debate in Parliament but only if the new government agreed to this. So, I waited and hoped.
A parliamentary debate date was scheduled for February 2025, with the day we dared to only dream of and prayed for, being told Skye was in remission, coming just under a year earlier in March 2024. Skye and I travelled down with a friend to Westminster and watched the debate live. It was an amazing day and to be able to attend with my daughter by my side, meant the world.
The outcome was positive, and the Minister agreed to a further meeting, which is great news.
I’m hopeful that a change could finally happen. No one should ever have to choose between caring for an ill child and keeping their job. These parents are already going through the darkest moments of their lives and deserve much better support, empathy and compassion from their employer, not the possibility of losing their family’s financial future.
From Contact magazine issue 107 | Summer 2025
