£1.5m needed to continue caring for Wiltshire's most seriously ill children
The charity Julia's House launches new fundraising appeal
Last updated 16th Sep 2021
Wiltshire's only children's hospice has launched a major fundraising appeal to help raise the £1.5m the charity needs each year to care for seriously ill children.
Julia's House gets no government funding in the county and relies entirely on public funding to keep it's hospice in Devizes and community services running.
The growing care needed for youngsters with life-limiting and life-threatening conditions and the pressures of the pandemic mean the public's support is more vital than ever.
Mike Bartlett, Deputy Chief Executive for Julia’s House, said,
“We’re so grateful to our supporters for their generous donations and fundraising efforts over the last few years, particularly the last challenging 18 months. But with an increasing demand for our services, we need more ongoing support to maintain our vital service in Wiltshire. We are currently raising £1m less in Wiltshire than we need each year to fund the care that local families depend on, and we can’t rely on legacy donations as they are so unpredictable year to year.”
Familes who receive help from the charity have been sharing their stories to help support the Together We Care Appeal
For the past five years Leanne and Simon lock from Salisbury have had respite care for their 12 year old son, Johnathon.
Johnathon has a complex and incurable genetic condition called CHARGE syndrome, which causes a range of physical and health problems. He's had to undergo numerous heart surgeries and also has a tracheotomy to help him breath.
The condition means he needs round-the-clock-attention from someone who is trained to care for him.
His mum Leanne says the care they receive from the charity is invaluable;
“When Julia’s House comes that’s the only respite we get at home, and they are amazing, Johnathon gets 2:1 attention and they’ve got time to do messy play and baking with him. It makes him happy and I love to see him laugh and joke around – he’s a different child when they visit.”
"The worry is always there with Johnathon in case he stops breathing, or his heart decides to pack up. It took me a long time to trust anyone, but I trust our Julia’s House nurses 100% with Johnathon, and I don’t know what we’d do without them. They make everything that we’re going through feel normal, and I think our normality would disappear if Julia’s House disappeared.”
The number of children in England living with life-limiting or life-threatening conditions has almost trebled, from 32,975 in 2001/2002 to 86,625 in 2017/18, according to the Make Every Child Count research study.
It reveals the prevalence of life-limiting conditions is highest for congenital abnormalities, higher for boys than girls, and greatest in babies under the age of one.