Children’s hospice support is ‘life-changing’, says Melksham family

Parents support of new Julia’s House children’s hospice £1.5million appeal

A MELKSHAM family is helping to raise awareness of the “life-changing” support and care offered by Julia’s House children’s hospice. 

Parents Lucy and Nik receive support from the children’s hospice to care for their two-year old daughter, Isla-Rae, who after being born prematurely, lives with cerebral palsy and dystonia – a condition that causes uncontrolled and sometimes painful muscle movements. 

The family also cares for Isla-Rae’s twin sister, Esmae, who also lives with cerebral palsy, and their four-year-old daughter Alarna. 

The family has shared their story in support of the hospice’s new ‘Together We Care Appeal’, which aims to raise the £1.5million needed to fund the charity’s service in Wiltshire each year – a service that does not receive government funding and relies entirely on public funding. 

The new appeal aims to raise awareness of the charity’s essential work with children who have life-limiting and life-threatening conditions and their families across the county, supporting them at home, out and about in the community and at the charity’s hospice in Devizes. 

Isla-Rae and her twin sister Esmae were born at 27 weeks, and doctors didn’t think that they would both make it home.  

Described to be like “two pearls in a shell”, the girls were so tiny that mum Lucy remembers cradling their head and body in just one of her hands. 

“After a week of the girls being born, they told us Isla had severe brain damage,” said Lucy. “That night they let me hold her for the first time because they really thought it was the last chance. I held her for hours – I didn’t want to let her go.” 

Against all odds, Isla turned a corner soon after. But just as she was starting to improve, the family got the news that twin sister Esmae had brain damage as well. They were told she wouldn’t be as acutely disabled as her sister, but it was unlikely she’d ever be able to walk or talk. 

“It took a while for us to get our head around having two children with cerebral palsy and what life was going to be like,” said Lucy. “Isla needs oxygen at home and she’s developed dystonia, which makes her muscles tense. She arches her back and twists her arms. There’s a lot of medication we need to give her, and two years on, I’m still feeding her every three hours through her tube.” 

The family have had a tough two years since the girls were born, with the worry and strain of hospital visits and round-the-clock care, while also looking after their four-year-old daughter Alarna. But mum Lucy and dad Nik are taking every day as it comes, with Julia’s House by their side. 

Lucy said, “I get anxious about leaving Isla and trusting people, even though I do have family that offer to help. But with Julia’s House, I know she’s in safe hands and I can relax. I’m up all night, every night with Isla, and I end up feeling quite down because I’m so exhausted. So for me, having that time to take a break and lie down, or do something fun with Alarna – it’s life changing.” 

The children’s hospice reports that caring for a child with complex needs can be isolating, scary and exhausting, taking a toll on families’ mental as well as physical health.  

They say, “Without Julia’s House, many of the families that the charity cares for would not get the respite breaks they so desperately need. The free and expert clinical care that the Julia’s House nurses and carers provide means that parents don’t have to reach breaking point, but get a chance to rest and recharge, knowing their child is safe.” 

Deputy chief executive for Julia’s House, Mike Bartlett adds, “We help the children and families make the most of their precious time together and support them through the tough times too. During hospital stays and when a child passes away, our nurses and carers continue to be by their side. The families we support often call us their ‘lifeline’ and we want to ensure we continue to be that lifeline, now and in the future.” 

It is estimated that the number of babies, children and young people living with life-limiting conditions has almost trebled in England over the past two decades. And due to continuing medical and scientific advances, children in Wiltshire are living for longer with more complex care needs. 

“There is a growing demand for the specialist care we provide in Wiltshire,” said Julia’s House director of care, Claire Hudson Cooper. “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. We really hope our Together We Care Appeal will help raise awareness of the vital work of the Julia’s House nurses and carers and how important local support is to the families we care for. In Wiltshire we’re 100% funded by our supporters, so we can only provide care if we care together.” 

To help reach the Together We Care Appeal target of £1.5m by Christmas 2022, the charity is encouraging local people, businesses, organisations and community groups to show their support in any way they can. From donations and fundraising, to joining in with events and volunteering.   

Mike added, “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 £1million 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. 

“We know times are still challenging for many of us, but we need to ensure we continue to be there to support the most vulnerable children and families in our local community.” 

Find out more about the Together We Care Appeal and ways to support local children and families at www.juliashouse.org/together-we-care