Chris McHugh/BBC“It didn’t feel like end-of-life care… it was bright, airy and there was laughter in the background.”
Kyle is describing the moment he first entered Julia’s House Children’s Hospice in Poole, Dorset. It was somewhere he and his family never thought they would be.
His daughter Skye, 5, has been cared for by the hospice since last year after developing a still-unknown condition which has made her future uncertain.
The hospice is running a Christmas appeal for donations, on which it says it “entirely relies” in order to support Skye’s family and others like them.
Chris McHugh/BBCWhen the BBC visits the family home in Weymouth, Dorset, Skye is smiling, vocal and keen to show off her cuddly Christmas elf.
But it wasn’t always like this. After beginning life as an active, happy “social butterfly”, Skye’s life changed on her first day of nursery.
“We thought she’d had a stroke,” her mum Sophie says. “She suddenly stopped using her right side, her speech slurred, and within weeks she couldn’t walk, sit up, or even hold her head.”
Despite numerous tests, a cause could not be found. The family were told that Christmas 2023 could be Skye’s last.
“We didn’t know we could hit that level of grief,” says Sophie. “We cried every single day.”
In early 2024, they were introduced to the hospice. “All we knew… is that would be where we’d go if Skye…”
“Passed,” Kyle says quietly.
But the hospice was not what they had expected. “It was beautiful,” says Sophie. “It was so welcoming, the team were phenomenal.
“We looked at each other and said ‘this is the place we would want to be as a family’.”
Shortly afterwards, Skye began a short-term experimental treatment, which resulted in significant improvements in her symptoms.
However, the treatment has come to end. Doctors do not yet know how she will respond.
Julia’s House has been caring for Skye, giving respite care for Sophie and Kyle, as well as support for her two brothers, Axel and Seth.
The hospice provides services for free but it only receives 8% of its funding from government and otherwise relies on donations and small fundraising events.
‘Cutting back’
As a result, says Mike Bartlett, deputy CEO for Julia’s House, they are hugely reliant on public donations.
“Lots are closing services and cutting back… we’re fortunate we’re not in that position,” he said.
“That’s due to the generosity of the public. But we have to be watchful… the last thing we want to do is cut any of the services we provide to families.”
As well as taking part in the hospice’s Christmas appeal, Skye’s father Kyle has fundraised by trekking 100km through a jungle in Columbia.
Her brothers are also taking on a 24-mile walking challenge, representing a mile for every infusion (a slow injection of medicine) that Skye has had.
Kyle says the hospice’s staff go beyond having direct impact on his family.
“They’re a pillar that supports our community,” he says. “They go out of their way to make sure we’re all supported.
“It enables people to [do] normal things and be contributors to society, even with the challenges we face.”
