Julia’s House children’s hospice are appealing for help to raise the £1.5m the charity needs each year to provide a lifeline of care for Wiltshire’s most seriously ill children.
The ‘outstanding’ rated charity relies fully on public funding in Wiltshire so they’ve launched the Together We Care Appeal to highlight the vital work their nurses and carers do.
Their support has been lifechanging for Leanne Lock, from Bemerton, Salisbury, who’s 12-year-old son Johnathon has a complex genetic condition that requires round-the-clock support and attention.
Johnathon’s story
“In Johnathon’s first months, we spent more time in hospital than we did at home,” said the mother-of-five.
“[He] was born with his tummy connected to his lungs. They said, ‘don’t expect too much. He’s not going to make it out of NICU.’
“We felt helpless, but we believed he’d keep fighting and we still do.”
Johnathon has CHARGE syndrome, a genetic condition which causes a range of physical and health problems.
He underwent major surgery soon after he was born to connect his stomach with his oesophagus but this was unsucessful, so he has a tracheotomy to help him breathe and is tube fed.
“Even now, Johnathon can stop breathing up to 30 times a night,” said Leanne who cares with him with her husband Simon.
“Sometimes I don’t like to go to sleep because I am scared of losing him.”
Johnathon's heart wasn’t formed properly in the womb, so he has needed several heart surgeries, and he has hearing and visual impairments.
Leanne mentions it took her a long time to trust others with Jonathon’s complex care needs, but she trusts Julia’s House expert nurses ‘100%’.
“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.”
“They make everything that we’re going through feel normal, and I think our normality would disappear if Julia’s House disappeared.”
Johnathon’s two younger sisters Sophie and Megan make a list of things to do with their parents every time Johnathon has got a Julia’s House sit planned.
“It’s nice to go to a café with them and have the time to give them the focused attention and fun that they need too.”
“The kids just amaze you every day” - Nurse Jesseca
Julia’s House Nurse Jesseca Lowe, has spent a day with Johnathon once a month, or every two months, throughout the five years she has worked for the charity and said it is a ‘pleasure’.
She continued: “It’s really nice to go to a child where they feel comfortable with you because you’ve known them for so long.
“Even though he can’t vocalise what he is trying to say, he presents himself so well and is so clever with his signs.
“He’s also so full of life and energetic, such a ball of fun. He’s got such a funny side to him, and he can really make you laugh.”
Based in the charity’s Devices hospice, the 30-year-old from Swindon said “I think people look at a hospice like its quite negative place, but that’s not the case at all.
“The children are just needing either 24/7 care, or quite complex care, which is where we come in.
“I think that any person who has children, regardless of conditions, it’s really scary to leave your child with anybody anyway, let alone if they’ve got a list of things that could go wrong so quickly.
“When these families are really at breaking point, there’s not many people who can step in and take the load off for a while, but at least with us that’s what we can do.
“I’m so happy to do it because these families are so appreciative, and the kids just amaze you every day.”
‘Together we care’
Julia’s House provides personalised care for up to 200 families across Wiltshire and Dorset, and families can choose whether to receive care at home, in the community, or at one of the charity’s two hospices in Devizes and Corfe Mullen.
The charity’s Deputy Chief Executive Mike Bartlett expresses his gratitude to their supporters over the past few years, especially during the pandemic, but highlights that they’re still raising £1m less in Wiltshire than they need each year as demand for their services increases.
The number of children living with complex care needs in England has almost trebled in the past decade, according to research conducted by the University of York.
Julia’s House Director of Care Claire Hudson Cooper said, “We want to be there for every local seriously ill child and family that needs us. But we need everyone’s help in Wiltshire to do that."
To reach the Together We Care Appeal target of £1.5m by Christmas 2022, Julia’s house is encouraging the community to show their support in any way they can.
They're also inviting locals to have their photograph taken in Salisbury on September 24, Market Place, from 10am to 4pm for a 'We Care Bear' selfie sculpture to feature in Devizes hospice garden.
Find out how to support local families and the Julia’s House Together We Care Appeal here.
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