WESTBURY teenager, Josselin Tilley, has been chosen to lead Julia’s House Christmas Appeal alongside her guide dog Stormzy. Her mum, Karen, says this is a way to give back to the charity that has provided so much support to their family over the years.
Karen provides round-the-clock care for Josselin and says she relies on the lifeline of care provided by the nurses and carers from her local children’s hospice, Julia’s House. Josselin’s story and her photos are now being used as a case study for their Christmas appeal.
Karen said, “We are just so proud of Josselin, we feel this is her way of giving back to an organisation that has helped us through everything life has thrown at us. The real hope and aim is that this inspires others to donate to Julia’s House, as they provide such an essential service to so many families. Josselin is 16 now and her service will finish at 18, but there are so many others that need to be shown the same level of support that we have been shown.
“I think it’s great that Josselin has become the face of this appeal as I think most people think Julia’s House only cares for little ones, but they cover a whole host of different cases. They’ve been there to support us when a lot of other support stopped – they were excellent during Covid and we can’t thank them enough. They’re the only kind of community nursing that we get and it allows Josselin to stay in the comfort of her own home, which comes as a relief to us all.”
Teenager Josselin will often sit bent double, covering her face with her hands to escape from a world she finds overwhelming. The 16-year-old has been blind and deaf from birth and is unable to walk, eat or talk because she has a complex and life-limiting condition called CHARGE syndrome. Josselin has had more than 35 operations – so many her mum has lost count – and she needs to be closely monitored because she has breathing and heart problems.
“Josselin can be awake constantly for three days and three nights,” said Karen. “She doesn’t know to close her eyes and go to sleep. And when she’s awake, I’m awake. It’s exhausting.”
The charity’s nurses and carers also provide sibling support for Josselin’s 10-year-old brother, Dalton, along with much-needed practical and emotional support for Karen and Lee.
“The only break I ever get is when the Julia’s House nurses and carers come to our home, or we take Josselin into the hospice,” said Karen. “There aren’t many people who will look after Josselin because her behaviour can be quite challenging, so the difference their support makes to us all as a family is massive.”
Julia’s House team nurse, Elaine Wilson, who is the family’s special ‘named nurse’, said, “We know this winter will be a tough and worrying one for everyone, and especially so for the growing number of families we support. When you’re caring for a child with a life-limiting or life-threatening condition, the days can feel very dark and lonely.
“We’re asking people to open their hearts wide this Christmas for the most seriously ill children in their local community. Any donations – no matter how big or small – will help us bring light to local families like Josselin’s, and give them the vital respite they desperately need.”
Julia’s House has to raise around £1.5million each year in Wiltshire to provide its specialist care and practical support for families – in their home and in the charity’s Devizes hospice. And with just 8% ongoing government funding, the charity is almost entirely reliant on the generosity and kindness of the local community to make that happen.
If you would like to make Christmas brighter for local families, please make a donation today at www.juliashouse.org/brighten
