THE family of a severely disabled blind and deaf teenager was nearly torn apart when her dad contracted Covid and went into a coma.

Now they are supporting a Christmas appeal for the children’s hospice that prevented her desperate mum from reaching breaking point.

Teenager Josselin Tilley 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.

She has had more than 35 operations – so many her mum Karen 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, who gives her round-the-clock care. “She doesn’t know to close her eyes and go to sleep. And when she’s awake, I’m awake. It’s exhausting.”

Until two years ago, Karen was supported by her healthy and strong builder husband, Lee.

But over Christmas 2020, Lee developed Covid. His condition deteriorated rapidly. He collapsed at home and was rushed into hospital.

Shortly afterwards he went into a coma for four weeks and during that time he had a stroke. Although he is now stable and recovering, it has left him too weak to look after all of Josselin’s complex care needs, or to work.

“It was really shocking for everyone,” said Karen. “For Joss particularly, it was really difficult because she didn’t understand where her dad had gone.

“Lee had always been the one that Joss reached out for when she wanted a carry, so when he came home she found it very frustrating that he couldn’t do that anymore.”

Julia’s House, the Wiltshire children’s hospice, 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 families like theirs can benefit from its vital support.

The nurses and carers provide regular respite care for Josselin in the hospice and at her home. They also provide support for Josselin’s 10-year-old brother, Dalton as well as 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, from Westbury. “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.

Karen said: “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 Dalton on his own.”

This Christmas, Julia’s House is appealing for donations to help fund its life-changing children’s hospice service and bring light to local children and families like Josselin and Karen’s.

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.”

The charity has to raise around £1.5m each year in Wiltshire to provide its specialist care and practical support for families – in their home and in the Devizes hospice.

And with just eight per cent continuing government funding, the charity is almost entirely reliant on the generosity and kindness of the local community to make that happen.

Visit juliashouse.org/brighten to find out more about the appeal or to make a donation online.