"She remained in the hospital for most of the next few years. One surgery – called a gastric pull-up – was undertaken to replace a section of her oesophagus with stomach tissue, but the surgery impacted her vocal nerves and the resulting damage meant she had to be fitted with a tracheostomy. This only made her care more complex, and extended the time she needed to spend in hospital.
I’m a single mother, so even when Zelcia came home our lives wouldn’t go back to the way they were. I had to quit my job; caring for Zelcia is full-time work, as she could require emergency care at any time. She’s affected worse by colds and other viruses, and during COVID-19 we were very isolated as we couldn’t take risks – for her it was all life-threatening.
Thankfully we had Demelza to lean on. When we were referred shortly after Zelcia had her tracheostomy fitted, around 2019, it was scary; the word ‘hospice’ was a bit of a shock as I only took it to mean they provided end of life care. It took time to let go of that anxiousness, but Zelcia got there much quicker than I did! During her first short break, when she stayed overnight at Demelza’s South East London hospice in Eltham, she was like a duck to water; she’d rarely left the house before this, but you wouldn’t know it. There were so many toys, and so many wonderful facilities – and Zelcia isn’t shy about letting people know what she wants to do – so it was just like a holiday for her. The staff really took the time to get to know her, and catered to her needs as well. We haven’t looked back since.
They were amazing through COVID-19 too. It was a really uncertain time, but we were still able to access our short breaks, and Zelcia actually got to enjoy some virtual music sessions as well which was great when we weren’t getting out much. It was a chance to socialise safely, and all of their efforts meant that we didn’t feel like we’d missed out on anything. It didn’t just benefit Zelcia either; I had a chance to chat with other parents, who understood exactly what I was going through and the challenges I was facing. There was no stigma or expectation, we were (and are) just parents doing their best.
We were also offered support with transport – Demelza’s practical support drivers were always ready to step up if I needed assistance getting Zelcia to the hospice, or even to a hospital appointment somewhere in London. The drivers were some of the nicest, most genuine people I’ve ever met and as a single parent, who often had no one else to turn to, they were a lifeline.
Zelcia is seven now, and due to her complex needs she didn’t access school until very late, but I’m happy to say she is in mainstream school now and she is thriving. She’s a brilliant child, and she gets along fantastically with other children and adults; I think we partly have Demelza to thank for that, for giving her a space where she was around other people and where she could develop those skills. Her tracheostomy is theoretically reversible – it all depends on her condition and how well she heals over time – but for the foreseeable future I know we’ll need as much support as we can get. Knowing that Demelza is here for us, to provide that support, is a huge relief.
I don’t think that Zelcia and I could have managed without Demelza, and I’m so grateful to them for always going the extra mile for our little family."