From heartbreak to hope
Julia’s House helps Skye’s family shine this Christmas
“They said this would probably be our last Christmas together, and to make memories while we could.”
At Julia’s House, Christmas is a time for laughter and precious moments — but for the families the charity supports, it can also bring worry and grief.
The family of five-year-old Skye, who has a rare and unnamed degenerative condition, are sharing their story as part of the Julia’s House Christmas Appeal.
The charity hopes to raise £65,000 this festive season to help fund its specialist care for seriously ill children and much-needed support for exhausted families. Each year, Julia’s House must raise around £5.1m to provide care across Dorset and Wiltshire.
“Everything changed overnight”
Just months before her devastating diagnosis, Skye had been a bright, bubbly toddler — a “social butterfly” who loved singing ‘Girl on Fire’ by Alicia Keys and racing brothers Axel and Seth on her scooter.
Then, on her first day of nursery, everything changed. “We thought she’d had a stroke,” says mum Sophie, from Weymouth. “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 countless hospital tests, doctors couldn’t find a cause. The family was told to prepare for the worst — that this might be Skye’s last Christmas.
“We put up the tree and helped Skye place the star on top,” Sophie remembers. “It was joyful and heartbreaking all at once. We cried every day.”
Finding light in the darkest times
At their lowest point, Julia’s House swooped in. “We were terrified when we heard the word ‘hospice’,” says Sophie. “But when we walked in, there was laughter, colour, children playing. It was full of life.”
Nurses and carers began supporting the family with regular respite sessions for Skye at the hospice and at home, as well as sibling support for Axel, eight, and Seth, 10, and emotional and practical help for Sophie and Kyle.
“Julia’s House wraps us all in love and care — I don’t know where we’d be without them,” says Sophie. “Skye loves spending time with her nurses, and those few hours of respite mean more than you can imagine.”
“Our little girl is singing again”
Last year, Skye began an experimental treatment — and to everyone’s amazement, she started to improve.
“After a few infusions, her speech started coming back,” Sophie says. “One day, Skye was in the bath singing ‘Girl on Fire’ again — and I just burst into tears.”
Now five, Skye is learning phonics, using her walker and dancing at home again. But what lies ahead is still unknown. Her ‘magic medicine’ has come to an end, and doctors don’t yet know how she will respond.
“We’re terrified the rug will be pulled from under us,” Sophie says. “But deep down we have faith that she will be okay, as there’s no other option.”
Giving back the gift of care
With only eight per cent of its ongoing funding from the Government, Julia’s House relies almost entirely on public donations to provide its lifeline of care.
“Skye loves to play at the hospice — it’s a joy to hear her giggling from the garden,” says her nurse, Claire. “But sadly, her future is still uncertain. We can only be there for families like Skye’s thanks to local support.”
This Christmas, Julia’s House is asking the public to help children like Skye enjoy being children, while their families find comfort and care when they need it most.
Julia’s House – more than you think
Julia’s House is your local children’s hospice charity, caring for children with life-limiting and complex medical conditions and supporting their families.
The charity’s team brings clinical care, comfort and laughter to the whole family. At their hospices and in families’ homes, Julia’s House offers regular respite care, end of life support, and wider help like therapies, practical advice and family fun days.
Donate today at juliashouse.org/Skye or call 01202 644220.
