A mum of a severely disabled teenager has shared how COVID tore her family apart almost overnight in a special Christmas Appeal to raise vital funds for the children’s hospice that helped prevent her from reaching breaking point.
Karen Tilley provides round-the-clock care for her daughter Josselin in their Westbury home, and says she relies on the lifeline of care provided by the nurses and carers from her local children’s hospice, Julia’s House.
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.”
Dad’s coma at Christmas time
Until two years ago, Karen was supported by her “very healthy and strong builder” husband, Lee. But over Christmas 2020, Lee developed 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. While Lee is thankfully 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 is a lifeline
Julia’s House is 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 our vital support.
Our nurses and carers provide regular respite care for Josselin in the hospice and at the family’s home. We 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.
“Josselin can self-harm and she can hit and scratch. I’ve got scars all up my arms from where she’s scratched me,” said Karen. “She’s not being aggressive, it’s just because she can’t talk and that’s her way of communicating with me.”
Hospice is Josselin’s special place
Karen said, “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,” said Karen “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.”
Appeal for donations to help local families
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.
Julia’s House Team Nurse Elaine Wilson, who is the family’s special ‘named nurse’, says, “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 just over £4m each year to provide its specialist care and practical support for families in Wiltshire and Dorset. And with just eight per cent ongoing government funding, the charity is almost entirely reliant on the generosity and kindness of the local community to make that happen.