Kentish Gazette Canterbury & District
‘Demelz are absolute lifesaver
The mother of a boy who needs constant care due to potentially deadly seizures has praised the lifesaving work of children’s hospices during the coronavirus outbreak. Six-year-old Elliot Relf, of Lordswood, has a DNM1 gene mutation which causes epilepsy, impaired vision, an inability to walk or talk, and means he needs a tube for food and medication.
With this week marking the start of Children’s Hospice Week, there’s never been a more important time to recognise the care given to thousands of children around the country, and mum Georgina said the ongoing support of Demelza hospice in Bobbing near Sittingbourne has been vital.
“It’s hard going, but Demelza are absolute lifesavers,” she said. “They have had our back since my son was about one, going above and beyond for us. “When you’re not in lockdown and going out for a nursery run or the shops we get a break from the same four walls. In lockdown, it just becomes a conveyor belt of stuff to do and the days melt into one.” Georgina says her son is more likely to have a life-threatening seizure while he is asleep and needs medication every few hours, so his care is constant. To compound the situation, Elliot’s family only leave the house for shopping or to pick up his medication, in order to shield him from the virus, and lockdown means Demelza can no longer offer respite care. However, they are still holding online home support sessions and play groups for kids, which Georgia says is great for breaking up the routine and giving the family something to do.
Elliot’s family also have the comfort of knowing Demelza can provide after-care if he was to need time in hos pital during lockdown. Georgina, 32, added: “If there’s nobody there after he goes into hospital then there’s no break to give a few days before going back to norit’s mal home life. definitely been a comfort knowing they are there if we need them. “They know Elliot so well. There aren’t many people I would ever leave Elliot in the hands of - but with Demelza, I really trust them 100%.” While coronavirus has made it harder for hospices to deliver their services, the further issue of the pandemic is that raising money for their work has also become more difficult – with charity shops and events closed and cancelled. Demelza chief executive Ryan Campbell said lockdown has impacted everything the organisation does, but they were rising to the challenge. Despite having to cancel all non-urgent care, they have taken in children who would not have been able to shield at home.
Visits have been limited and children need to quarantine in the hospice for two weeks before integrating with other children. Mr Campbell said: “We have had nobody – no child, family member or staff member – contracting the virus. Which is testament to a bit of luck but also to some very stringent infection control. “We’ve also had conwith tact around 400 to 450 family members per day. So in some ways, although it’s less face to face work, we’re having more contact with more people in the middle of a pandemic, something that I’m extremely proud of.”
He says the resilience of families and children continues to surprise him, adding: “I guess this is because, to some extent these families have quite restricted lives anyway. Some have said ‘now the rest of the world has seen what it’s like to be us’. “But also some of the families outside of our care are really starting to struggle and children are struggling because of the lack of social contact and educational opportunities. “Also when a child has a relatively short life to begin with, to lose weeks and months of that is a hard thing to be able to deal with. Our therapy services are particularly active and needed at the minute.”
To mark Children’s Hospice Week, we spoke to people who use specialist facilities in Kent about what help they receive and the difference it makes. Chris Hunter and Sophie Bird report