Children's hospice Julia's House appeals for donations

Karen said Julia's House is a lifeline for her and her whole family

A charity is appealing for donations to help fund its children's hospice service.

Julia's House in Wiltshire provides care for children and teenagers with life-limiting or life-threatening conditions.

Karen Tilley, mum of a disabled teenager Josselin, has shared how their family benefits from Julia's House.

"The difference their support makes to us all as a family is massive," Mrs Tilley said.

Martin Edwards, chief executive at Julia's House, said the current cost of living crisis could also mean a 35% drop in individual donations this year.

"We are most worried about the pressures on the families in the cost of living crisis, given the greater reliance of disabled children on electricity for things like powering wheelchairs, oxygen machines and generally the need to keep them warm over winter," he said.

"They can't just turn these costs off."

The charity's nurses and carers provide regular respite care for Josselin and sibling support for her 10-year-old brother, Dalton, along with practical and emotional support for Mrs Tilley and father Lee.

Josselin has been blind and deaf from birth and is unable to walk, eat or talk, due to a condition called CHARGE syndrome.

The 16-year-old has had more than 35 operations and needs to be closely monitored because she has breathing and heart problems.

The charity's nurses and carers provide regular respite care for Josselin

Mrs Tilley was supported by her husband, until he caught Covid-19 and his health deteriorated rapidly.

While he is now stable and recovering, it has left him too weak to look after Josselin or to work.

"For Joss particularly, it was really difficult because she didn't understand where her dad had gone," Mrs Tilley said.

"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."

Since then, Julia's House is a lifeline for Mrs Tilley and her whole family, and they hope that by sharing their story it will help to raise funds so more local families can benefit from its support.

"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."

The charity also provides sibling support for Josselin's 10-year-old brother, Dalton

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."

Julia's House has to raise around £1.5 million each year to provide its specialist care and practical support for families.