Julia’s House – a local charity dedicated to supporting the families of children with life-limiting or life-threatening conditions in Dorset and Wiltshire – is appealing for people to help brighten the lives of the children it cares for this Christmas.

The charity needs to raise just over £4m each year to provide its specialist care services. Only eight per cent of its income is from ongoing government funding, so it is almost entirely reliant on the generosity and kindness of the local community to make that happen.

One mum tells the story of how the charity has helped prevent her from reaching breaking point.

Karen Tilley provides round-the-clock care for her daughter Josselin and relies on the lifeline of care provided by the nurses and carers from Julia’s House.

Josselin, who is 16 years old, has been blind and deaf from birth and is unable to walk, eat or talk because she has CHARGE syndrome, a complex and life-limiting condition. She has had more than 35 operations and she needs to be closely monitored because she has breathing and heart problems. She will often sit bent double, covering her face with her hands to escape from a world she finds overwhelming.

Karen said: “Josselin can be awake constantly for three days and three nights. She doesn’t know to close her eyes and go to sleep. And when she’s awake, I’m awake. It’s exhausting.”

Karen had been supported by her husband, Lee, but over Christmas 2020, Lee came down with Covid and his health deteriorated rapidly. He collapsed at home and was rushed into hospital. Shortly afterwards, Lee went into a coma for four weeks and during that time he had a stroke. He is thankfully now stable and recovering, but his bout of Covid has left him too weak to look after Josselin’s complex care needs, or to work.

Julia’s House has become a lifeline for Karen and her whole family, and they hope that by sharing their story it will help to raise funds so more local families like theirs can benefit from its vital support.

Julia’s House nurses and carers provide regular respite care for Josselin in the hospice and at the family’s home, as well as sibling support for her 10-year-old brother, Dalton, and much needed practical and emotional support for Karen and Lee.

Karen said: “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. 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.

“Josselin can self-harm and she can hit and scratch. I’ve got scars all up my arms from where she’s scratched me. She’s not being aggressive, it’s just because she can’t talk and that’s her way of communicating with me.

“Sometimes Josselin can spend her whole day doubled over with her hands over her face because then she’s completely cut off from everything and she feels safe like that. When she does look up and smile it’s completely magical because then you know she’s really happy.

“She’s calm when she goes to the hospice and knows the Julia’s House nurses and carers by touch – she feels the shape of their badges and their polo shirts. Most 16-year-olds would be going off with their friends, so it’s nice for her to go into the hospice and have somewhere different of her own.

“There are a lot of things to entertain her at the hospice, which we wouldn’t be able to have at home too, like the magic carpet and sensory room, and the big specialist bath. And when Joss is being looked after by Julia’s House, that’s the only time we get to do things with our son Dalton on his own.”

Elaine Wilson, team nurse for Julia’s House, 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 across Dorset and Wiltshire. 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.”

If you would like to make Christmas brighter for local families, you can make a donation at www.juliashouse.org/josselin