Issuu

Spring 2026

Ev e r y

Giggle Appeal

What’s inside Ella’s story

Changing needs

Toys galore!

How you’re helping ‘little miracle’ Ella lead the way with lots of laughter.

Anyone for a mocktail? Care needs are changing and so are we.

Take a peek inside our new superstore with our biggest-ever toddler zone.

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03/03/2026 19:50

Dear Supporter We have much to look forward to this year, as the days start getting longer and warmer. In Dorset, we now have more space in the hospice to care for older children and young people and to host families, following the completion of a small extension to the building, made possible by a time-limited Government fund. In Wiltshire, we continue to make good use of ‘Rachel’s Retreat’, a multi-use garden room, named after our late and much-loved Rachel, a Julia’s House Senior Carer who was amazing with the children. You can also read here about the difference you make to Ella and many other children like her, and to their families. Times are still challenging. Your support is hugely valued. Our care is your gift to the community.

Ella’s our little

miracle Anyone who has met Ella can see she’s full to the brim with life. She adores her Labrador Rufus, rough and tumble play, and she loves anything silly – the sillier you are, the more she’ll giggle! Yet, when Ella was born, her parents Chloe and Kyle were told their tiny newborn was ‘incompatible with life’ and to make their end of life wishes. Now, more than five years on, Ella continues to defy expectations. Mum Chloe says Julia’s House is helping to fill Ella’s world with laughter...

Thank you

Martin Edwards Chief Executive, Julia’s House

Stay in touch... Call us Email us Visit us

01202 644220 info@juliashouse.org juliashouse.org

We were told to say our goodbyes when Ella was just three days old – her consultants didn’t think she’d survive long enough for us to take her home. But she’s five now. She’s surpassed all expectations, so we really have no idea what she’ll do next. Typically, children with Ella’s condition don’t survive past the first trimester and if they’re born alive, they have just a 13 per cent chance of reaching their first birthday. When we were told Ella had Edwards’ syndrome, the doctors said she was ‘incompatible with life.’ I remember those words so vividly. It basically means that if the child survives birth, they’ll never walk, talk or eat – and all their organs fail. But Ella’s the complete opposite of incompatible with life; she’s the happiest little girl you could ever meet – constantly beaming!

Signs in the scan Dorset address: Julia’s House, Head Office, Ground Floor, Allenview House, Hanham Road, Wimborne, BH21 1AS. Wiltshire address: Julia’s House, Bath Rd, Devizes, SN10 2AT. Thank you to our featured volunteer photographers, Jon Bolton, Chloe Palmer and Brandon Moss.

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All through my pregnancy, Ella was really tiny. At a 35-week scan, the consultant told us that Ella had her fingers overlapped and her fists tightly clenched. She didn’t say the words ‘Edwards’ syndrome’ at the time, but I now know that’s a sign of the condition. The consultant suggested an amniocentesis, but the next day they realised Ella had stopped growing so I was induced instead. Ella was 3lb 4oz when she was born, and at her lowest weight in NICU (Neonatal Intensive Care Unit) she was just 2lb 9oz.

03/03/2026 19:50

e Ev e r y

Giggle Appeal

Ella will lead the way She needed oxygen and life-saving bowel surgery but otherwise seemed stable. Then, at three days old, they took us into a side room full of doctors. We just thought, ‘Oh no, this can’t be good.’ Edwards’ syndrome is one of the conditions routinely checked for during pregnancy scans. Our early scan results showed a low risk, so being told that Ella had Edwards’ syndrome came as a complete shock. We were asked to make end of life wishes right there and then. It was during COVID, and our only wish was for Ella’s grandparents to meet her. It was heartbreaking – we didn’t know if they’d ever see her. Kyle and I didn’t leave her side. But even then, Ella was surprising everyone. So, we just thought, ‘Ella will lead the way.’

A terrifying first week home When Ella was six weeks old, they let us bring her home. It was unbelievable. But two days later, she became violently sick. Then suddenly Ella went grey and floppy and stopped breathing. She died in my arms, and I had to give her CPR. It was terrifying. She was so tiny I used just one finger on her chest and breathed over her whole face. Thankfully, she came around straight away. And within minutes the

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paramedics had arrived to help us. They sent Ella home from hospital that evening but the next day it happened again. The doctors changed Ella’s milk after that and fortunately it never happened again! Up until she was around four, any little bug would make her really poorly and we’d end up in hospital. She is still susceptible, and we had a scary stretch last year, but things feel calmer now. She’s diddy but tough.

‘Ella loves it all’ at Julia’s House We do have to be cautious about where we go with Ella because she’s so vulnerable, so she tends to miss out on socialising. That’s why Julia’s House is brilliant. She can have the best time in a safe space, with so many children. And Ella absolutely loves kids – she thinks they’re the funniest people in the world. We’ve been cared for by Julia’s House for around two years now. It’s great for the whole family, but especially Ella. The minute we pull up she gets so excited because she knows where she’s going. She’s made lovely friends and she loves her nurses and carers too. Molly is our named nurse, and Ella is obsessed with her – she always gives Molly the biggest smiles and giggles. Ella loves anything sensory – the hospice’s sensory room, messy play with sand and paint, music, baking, reading. ›››

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››› She just loves it all! And for us, it’s reassuring

that we can leave Ella with her Julia’s House nurses and carers and not worry. They know Ella so well and what to do if anything happens.

spaces for New changing needs

Family fun and support Last summer, we went to the Julia’s House Family Garden Party. Ella had an absolute ball – she loved the chaos, the kids, the music and the animals. It was lovely for us to see other parents who we know there too. It’s always nice when I do see the other parents at Julia’s House because they completely get what life is like with a child who has complex medical needs. I have other friends, but they don’t understand what life is like – not really. But at Julia’s House, it feels like you’re all in it together.

Support our

Every

Giggle today

Appeal

Every day, Julia’s House is there for families like Ella’s – offering expert care, fun, and precious moments together. But we can only do this with your help.

“Anyone for a mocktail?” aren’t words you might expect to hear in a children’s hospice. But when Oscar recently turned 18, our nurses and carers celebrated his special day – and final hospice session – by creating a makeshift cocktail bar (with non-alcoholic drinks only!) in our new garden room, Rachel’s Retreat. “This calming spot in our Devizes hospice garden is the perfect breakout space for the older young people we support,” says Julia’s House Lead Nurse Ken Hull. “It was built in tribute to Rachel Cowley, a dearly loved Julia’s House Senior Carer who sadly died from cancer in 2024.”

£25

could buy a sensory toy to help a child’s development, or storybooks for bedtime reading.

£65

could give overwhelmed parents the support they need when applying for equipment.

As medicine advances and more children live longer with complex medical needs, the number of teenagers needing hospice care continues to grow. Around 25 per cent of children in our care are now teenagers.

£100

could help towards respite care for a seriously ill child that enables the rest of the family to have a much-needed break.

“Care needs are changing, so we must adapt too,” says Ken. “After college or school, many teenagers simply want time to relax, so we use our spaces differently to reflect their interests.”

juliashouse.org/giggle Simply scan to donate

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Young people might game in the Den, watch films, or enjoy music, crafts or reading in Rachel’s Retreat. “We’ve even had a DJ visit,” Ken adds. Rachel’s Retreat also supports wider family needs, offering space for complementary therapy, private parent catch-ups and whole-family activities, including our recent Santa’s Grotto.

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„

One of the best days was going on a disabled access narrow boat... I never thought I’d be able to drive a boat!

Meet

Oscar! Oscar

Can you remember your 18th birthday? It’s an especially happy milestone for the children in our care – although bittersweet too, as it marks their transition into adult care. After eight fun-packed years with Julia‘s House, teenager Oscar shares his experience… Hi, my name is Ozzy - I‘m 18 years old and I live with my mum, dad, my annoying younger brother Arthur, and my two cats, Izzy and Smudge. I enjoy going for walks, cooking, listening to music, gaming, movies, board games and swimming. I also volunteer at my local community radio station. I’m very sociable and like to talk and have a laugh. There are lots of types of muscular dystrophy. My type (CMD1A) doesn‘t get worse, but as I’ve grown, things

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like my breathing and muscle tightness have become harder. I enjoy going to Julia’s House and spending time with other kids like me. When I was younger, I liked story times, but as I got older I really appreciated themed days like cookery and music. The nurses and carers always treated me with respect, especially with personal care, and I could talk to them if I needed to. One of the best days was going on a disabled access narrow boat... I never thought I’d be able to drive a boat! I feel very sad about leaving Julia’s House and will miss our sessions, but I’ll always remember the fun times. I’m now going to volunteer at Julia‘s House to give back for everything they’ve done for me.

Read Oscar’s full blog at juliashouse.org/Ozzy

03/03/2026 19:50

In the news...

Toys galore at our new Devizes store Thank you for helping Skye shine! Skye’s emotional story of heartache and hope moved us all this Christmas. We’re incredibly grateful for your thoughtful Shine gift card messages for her family, and for your generous donations to our Christmas Appeal. Thanks to your kindness, we raised a record £82,700 to support our loving, specialist care for families like Skye’s. You’ve helped bring comfort, joy and truly magical moments to the children we cared for this Christmas – thank you so much.

Martin’s 20/20 Challenge Our CEO, Martin Edwards, marked his 20th anniversary year at Julia’s House by taking on 20 unforgettable challenges — from a skydive and an army fitness test, to abseiling down the Spinnaker Tower, a 100-mileper-hour zipline, running the Bournemouth Half Marathon dressed as Spider-Man, and a 70-mile walk from Devizes to Poole between our two hospices. Each challenge was shared with a different partner, including Vikki Slade MP, who joined Martin for a triathlon across her constituency, and musician James McVey, who challenged him to get a matching tattoo inspired by the Julia’s House logo. The final test? Twenty days of bracing midwinter sea dips! Martin said: “It’s been extreme, exciting and exhausting — but completely worthwhile. Thank you to everyone helping to raise an incredible £130,000.”

Have you visited our brand new superstore in Devizes yet? We opened the doors to our largest Wiltshire shop earlier this year and it’s already proving to be a big hit with local shoppers. It’s our second shop in Devizes (so good we opened another one!), and inside you’ll find our biggest-ever toddler zone – packed with fun and fantastic things for the lovely little people in your life. There’s plenty for grown-ups too, with top-quality clothing and accessories, beautiful and useful homeware, furnishings, and stacks of great reads to get stuck into. Next time you’re in Devizes, please do pop in to say hello and have a browse, or donate something you’ve loved and no longer need to help support our care. For all things shops, please visit

juliashouse.org/shops

Great Wiltshire Walk Our Great Wiltshire Walk is back! Join us on the 11th July to trek a half or full marathon hike through stunning Wiltshire countryside, with the iconic Avebury stone circle as your final landmark. Celebrate at the finish line with a glass of prosecco and a pulled pork sandwich (or veggie/vegan option). Walk with friends and family or meet new faces, all while going the extra mile for the families we support. Even better, Malmesbury League of Friends will be generously matching every donation, up to £10,000. Find out more at

juliashouse.org/walk

Martin’s efforts were recognised with Fundraiser of the Year at the prestigious Charity Heroes Awards, along with a £5,000 prize for Julia’s House.

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03/03/2026 19:50

Remembering...

New Space

at our Dorset hospice The extension at our Dorset hospice features new equipment and spaces that will help us better meet the needs of the older children we support, as well as improvements to our end of life suite.

Disco lights and bubbles!

Helping families be together

Wider corridors and ramps will make it easier for everyone to access and move around the hospice as we can accommodate the larger electric wheelchairs used by lots of the young people we support.

Our end of life suite will have a private entrance, a large, self-contained family room with plenty of bed spaces for the whole family and a kitchen area so they can make their own hot drinks and meals whenever they want to. New hoists mean children and young people can easily be moved from the family room to the bathroom and through to their own room overlooking the hospice garden. These new facilities will ensure a family can stay together and feel the closeness they need, in a private space just for them.

A larger upstairs bathroom with a bigger bath means everyone can enjoy an immersive bathing experience complete with underwater disco lights and bubbles! And there’s a hoist between the upstairs bathroom and bedroom, allowing more privacy and warmth for young people who visit us on a regular basis for respite care.

Thank you to creative director, Damian Scott, and Mambo Media for creating this moving film as a wonderful gift in kind.

Watch the video at juliashouse.org/remember

We’ll share photos of all the new spaces in our autumn newsletter!

I was never alone when my mum

held my hand

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A new film features Julia’s House nurses and carers remembering some of the wonderful children they have cared for at the end of their lives, giving an insight into the difference our care can make to a child and their family at this time. We help to ensure every child is as comfortable as possible and that their whole family has everything they need to help them plan and prepare, at home or in the hospice. We are right by their side, helping everyone be together to say goodbye.

I’m leaving a gift in my Will so the children and families at Julia’s House will always have someone holding their hand, providing care, comfort and support. Find out the difference you could make by leaving a gift in your Will at juliashouse.org/alwaysthere

03/03/2026 19:50

I’d like to join the Lottery Give a little, care a lot, and for just £1 per week there are 23 weekly cash prizes to be won!

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The promoter of Julia’s House Lottery is Martin Edwards. Julia’s House, Ground Floor, Allenview House, Hanham Road, Wimborne BH21 1AS. Registered with The Gambling Commission under the Gambling Act 2005 (gamblingcommission.gov.uk) Registration No. 000-039939-N-319913-010. Charity No. 1067125. Access support from: GambleAware begambleaware.org. Julia’s House promotes responsible gambling. Players must be 18 or over and a Great Britain resident. For lottery terms and conditions go to: juliashouse.org/lottery. In 2025, 58% of lottery proceeds - £409,602 - went back to the charity to provide vital care. 11% was spent on prize money and 31% on expenses such as administration and marketing the lottery. You have a 1 in 591 chance of winning one of our weekly prizes (correct as of 20.1.26).

Thank you 03/03/2026 19:50