Many of us have experienced the effects of social isolation during the COVID pandemic, but for the families supported by children’s hospice charity Julia’s House, this is a struggle they face daily. As part of our ‘it’s not about us’ guest blog series, we hand over to Caroline Attreed, Corporate Fundraiser, who tells us the story of young Ellie and explains why Julia’s House need our support more than ever this time of year.
An Introduction
“At Julia’s House we support the families of children with life-limiting and life-threatening conditions across Dorset and Wiltshire. Time is short for these children, so every single moment is precious. We aim to create happy memories for our families, no matter how short their time together may be.
Our lifeline of care provides comfort and reassurance to anxious and exhausted parents. Regular respite support, plus emergency and end-of-life care, is provided completely free of charge thanks to the generosity of people like you. We rely on public donations, fundraising and legacies for 95 per cent of the money needed to run our vital service.
During COVID, we have adapted our care on an almost daily basis, with visits taking place in family homes as well as video play sessions and story-time, as we respond to individual needs in line with government guidelines. By helping these children to stay safe and well at home, Julia’s House aims to reduce the burden on our NHS colleagues as the winter months approach.
Every single family supported by Julia’s House receives totally bespoke care. Parents can choose when, where and how they receive their care – at home, in the community or at one of our two hospices in Corfe Mullen and Devizes. It is a truly flexible service – it has to be, as no two families have exactly the same needs. We are there for the whole family, not just the sick child, providing emotional support and social opportunities for parents, grandparents and siblings to help break the cycle of isolation and fear that impacts their lives, throughout COVID and beyond.
Ellie’s Story
In this year’s Julia’s House Christmas appeal, one of our Wiltshire parents, Jenna, speaks about how she feared that a photograph of her two children might be the last one taken of them together.
Jenna and Luke Humphries’ little girl Ellie was just 6 months old when doctors discovered a large brain tumour.
“Ellie was normally such a sunny-natured, happy girl, always smiling and laughing – but her whole mood changed,” explains Jenna. ”The photo of Ellie and her brother Tom was taken the day before her operation and for a long time we could not look at it because it was too raw and full of emotion.”
Left for even a few more days, Ellie’s tumour would have been inoperable. She was in surgery for 14 hours and suffered a stroke which left her partially sighted and with no movement down her right side.
“She was this tiny bundle with a bandaged head lying in my arms and were told we should just enjoy the time we had left with her,” says Jenna. “She had started chemotherapy but there was only a slim chance it would work.”
Then, just a week before Christmas, the family received the devastating news that Ellie would require another operation to relieve pressure on her brain, and they risked losing their little girl all over again.
“We had just five hours together as a family on Christmas Day. Ellie came home again on New Year’s Eve. She was due to have an injection just before midnight but we couldn’t wake her up, she was like a rag doll. While everyone in our village was looking at the fireworks we were looking out for the flashing lights of an ambulance.”
When Julia’s House entered the family’s lives, Jenna and Luke were finally able to benefit from some desperately needed respite time. “We were like zombies, just so exhausted trying to cope. The word hospice was mentioned and we were horrified – but that was before we truly understood what Julia’s House means to families.”
Home care sessions meant that Jenna and Luke could spend quality time with their son Tom, knowing that Ellie would be safe and cared for in their absence. Then just before lockdown Ellie caught pneumonia because of her weakened immune system and ended up in hospital, meaning the family had to shield for 12 weeks to keep her safe. “Ellie’s nurses would phone and check everything was OK and help out with picking up prescriptions or food. They were there for whatever was most important for us. Trying to do a job, home school Tom and keep up with all of Ellie’s speech and language targets and physio was a real struggle, so when we were able to have care again it was an absolute godsend.”
Ellie continues to have brain scans every three months to ensure she is still clear of cancer. Her next one will be the week before Christmas. “Every time we’re scared that something will show up,” Jenna admits. “We call it ‘scanxiety’. We love Christmas, but for us it will always be associated with heartache and being frightened for Ellie’s health. It has been an emotionally exhausting journey, a bittersweet cycle of hope and despair, and we are just so thankful Julia’s House has been by our side.”
During 2020 Julia’s House has had to cancel many major fundraising events, and our chain of high street charity shops were forced to close for the lockdown period, creating a significant impact on our income. As the restrictions due to COVID-19 continue, we are anticipating another challenging year ahead, during which many of our fundraising efforts will be driven online. Our supporters have been amazing this year and we do want to send a huge thank you to them for standing side by side with us and helping us to keep on caring for the children and families in our community that need us the most.
How You Can Support Julia’s House
The first of these initiatives is an online Christmas concert – the Julia’s House Christmas Cracker, which takes place on the Julia’s House Facebook page at 7.30pm on Wednesday 2 December. Co-hosted by actress, impressionist and Julia’s House patron Debra Stephenson alongside our CEO Martin Edwards, this evening of entertainment for all the family features live music, celebrity guests and much more. It’s free to attend, and there will be the opportunity to donate live throughout the evening.
To donate to this year’s Julia’s House Christmas appeal visit www.juliashouse.org/Ellie or call the Donations Team on 01202 644220. You can also support Ellie by buying one of the new range of virtual gifts from Julia’s House to give a more meaningful present this Christmas.
Thank you so much.”
