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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 Elliott Relf from 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 today marking the start of Children's Hospice Week, there's never been a more important time to recognise the care given to thousands if children around the country, and mum Georgina said the ongoing support of Demelza hospice in 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, Elliott'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.
Elliott's family also have the comfort of knowing Demelza can provide after-care if he was to need time in hospital during lockdown.
Georgina, 32, added: "If there's nobody there after he goes into hospital then there's no break to give us a few days before going back to normal home life. It's definitely been a comfort knowing they are there if we need them.
"They know Elliott so well. There aren't many people I would ever leave Elliott 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 cruel twist of the pandemic is that raising money for their work has also become more difficult - with charity shops and events closed and cancelled.
Ryan Campbell, chief executive of Demelza, said lockdown has impacted everything Demelza 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 added: "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 contact with 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."
The chief executive 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."
Meanwhile in Gravesend, ellenor hospice is facing the same challenges - but the story of the Warwicker-Woodgate family shows ellenor too is battling to maintain its care.
The family from Northfleet have had to separate during lockdown in the quest to keep everyone safe, but ellenor have been on hand to provide reassurance and practical support.
Samantha Warwicker’s nine-year-old son, Harry Woodgate, has cerebral palsy with additional, complex health needs, and when he became unwell with non-Covid-related complications just before lockdown, he was sent to the Evelina children’s hospital in London.
Because Sam accompanied him, Harry’s 13-year-old sister Rhianne went to stay with Sam’s sister and her family, but once Harry was home from hospital, lockdown was in full swing, meaning it was a couple of weeks before Rhianne could come home - but ellenor was on hand to offer support and guidance.
“Ellenor has been part of our lives since Harry was tiny,” added Samantha. “We’ve had a variety of nurses over the years, and they’ve all been great. Rebecca has worked with us for the past six months and we’ve got a real sense of trust - not just between her and Harry but between her and me, too."
Practical support included putting a plan in place to help the family to cope with lockdown, making sure all medicines and prescriptions for Harry were ready, and providing food parcels.
“If I needed anything, I knew I only had to ask, and there were things I didn’t ask for but got anyway, " said Sam. "It’s something we never take for granted and that we’re so grateful for.
“We’ve all benefitted from ellenor’s services over the years and in such a wide variety of ways. We’ve got great memories from the trip we all took as a family to Disneyland Paris, where the fabulous ellenor nurses who accompanied us ensured we didn’t have anything to do except enjoy ourselves.
“Whatever we’ve been through, the charity’s been there for us - just as we know it’ll be there for us whatever the future throws our way.
"That’s why I’ve always been happy to take part in any ellenor-sponsored events, like the Twilight Walk, which Harry and I did together.
"It’s our way of giving back. We never thought we’d have to deal with a pandemic situation on top of everything else that’s come our way - Covid-19 could have proved the last straw in our ability to cope. With ellenor’s help, though, we’re dealing with the situation, each day as it comes, and we never feel we’re alone.”
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