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Autumn 2026 Lily with nurse Susie in the hospice garden

Story Mum Jodi shares Lily’s inspiring journey Pg 3

Julia’s House has Christmas wrapped up!

Care without limits

Pg 6

Precious new spaces

Heroes wear therapy tunics

Every small moment counts

Meet two new faces

See inside our Dorset hospice extension Pg 1

A moment of human connection can mean everything - Pg 3

Why play means so much more than you think - Pg 5

Our new starters are settling in Pg 10

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12/08/2026 12:18

In the news... We see all life in a day at Julia’s House. The daily contrasts of a children’s hospice are perhaps more extreme than in any other charity. There are many more high points than people might think: every time a child’s face lights up in our care, the daily play, singing, sometimes water fights in the garden, and children petting visiting therapy dogs or even the occasional armadillo. In the many and varied fundraising ventures by our supporters, we see extreme dedication, fun, and often bravery. We see an enormous variety of donated goods in our shops, which our ever-cheerful team sorts and prepares for sale. We have some very sad days at the hospice, as you would expect, filled with the deepest care and compassion. Yet there is life and love along the way, and we help fill however long that time may be with moments of joy. We hope the pages here give you a glimpse into this extraordinary world. 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

The new extension to our Dorset hospice has been super busy since it opened in April with sleepovers and bath nights, which all the children, especially the older teenagers we care for, have loved. “It’s been so great to open the new rooms to all the children and hear the fun and laughter and how much they’re enjoying the space,” says Nat, Lead Nurse at the Dorset hospice. “The older children especially can move around more easily in their larger electric wheelchairs. And there are lots of fans of the new bigger baths with their lights and music – many of the young people we care for can only have a shower at home because of space. “We have also been able to offer more space and privacy to support a family at the end of their child‘s life, so they could spend that precious time all together.” The extension was fully funded by a one-off Government capital grant and contributions from a number of capital trusts, so did not impact our ongoing care costs.

Dorset address: Julia’s House, Head Office, Ground Floor 25-26 East Street, Wimborne, BH21 1DU. Wiltshire address: Julia’s House, Bath Rd, Devizes, SN10 2AT. Thank you to our featured volunteer photographers, Jon Bolton and Phil Abraham.

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2 Helen having bubble fun with Esmai in the hospice garden

One of our amazing nurses, Helen, was shortlisted for a national WellChild award! Congratulations Helen! She was nominated by one of the families she supports, so it feels extra special. While Helen didn’t make the final, she beat hundreds of nominations from across the country. The award recognises the inspirational qualities demonstrated every day by people supporting the UK‘s seriously ill children and young people going the extra mile to make a difference to their lives. Everyone at Julia’s House is so proud of you Helen!

Nearly two-year-old River is the inspiration and motivation behind his dad Brad’s cycling challenge! Over the summer, Brad has been cycling 1k for every £1 he raises and that’s looking like more than a 2,000k cycling marathon! River was born three months prematurely and spent a long time in both Southampton and Poole NICUs (Neonatal Intensive Care

Unit). When River was finally able to come home, Brad and his wife Katie struggled with their physical and mental health caring 24/7 for River, as well as his brother, Devon. Then Julia’s House came along. “River has both home and hospice care sessions, giving Katie and I some much needed respite,” Brad shared. “River just loves going to the hospice to do messy food or sensory play – he’s a real character

now! It‘s so reassuring as a family to know charities like Julia‘s House exist because they offer families the chance to rest and the reassurance that they are not alone. As Julia’s House has given us so much, I thought it was my time to give back. I’m currently up to £2,700 and I am honestly taken aback by people’s generosity and kindness. It’s been a long summer but it’s so worth it!”

Brad in action on his bike challenge

Brad and his inspiration, son River

You can still support Brad and Julia’s House at: www.justgiving.com/page/brad-sparkes-1

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Lily makin g ‘trifle’ at the Summer Camp Festival

Lily with mum Jodi in the hospice garden

sory the sen Jodi in d n a y il L spice t the ho room a

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I was referred to Julia’s House when Lily was four months old. I don’t know what I’d have done without them; they’ve been an incredible support.

„

Vanessa with Ella at the hospice

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Lily an d Jod i at th Christ e mas G rotto

Vanessa came to Julia’s House with over 20 years of nursing experience and is our very own superhero massage therapist, working with families both at the hospice and in their homes.

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Mum Jodi shares Lily‘s story, from her first few months of life to exceeding doctors‘ expectations. For the first week of Lily’s life, she had so many tubes I couldn’t see her little face and she remained in the NICU (Neonatal Intensive Care Unit) until she was two months old. After extensive genome testing, I was told Lily had PURA syndrome – I was devastated. Affecting only a small number of individuals worldwide, for Lily, PURA means a life-long condition including severe developmental delay, intellectual disability and hypotonia (low muscle tone) throughout her body. It affects everything from breathing to movement, feeding and processing of the world around. Lily is on a ventilator every night to support her breathing due to sleep apnoea, and she experiences excessive hiccupping, reflux, constipation and eating difficulties on a daily basis.

Finding Julia’s House was what I needed Just before she was discharged from hospital, Lily and Jodi were referred to Julia’s House. At that time, I was so scared Lily might contract germs or get sick, I would hardly go out. And even though I knew the Julia’s House staff were more than capable, I wasn’t happy leaving her initially. They would come to the house and I would stay home, so I was close to Lily. It took time to adjust to that pocket of time where I could breathe and take a step back. But I needed it and eventually I came to look forward to it, because I knew Lily was in safe hands with the Julia's House team. The nurses gave me plenty of feedback, but it took a lot for me to trust them to feed her – because it’s such a complex procedure and I’d been handling it alone since Lily had come home – but they have been amazing and very patient with my anxieties. Julia’s House has a fabulous complementary therapist, which I found to be the release I needed. I’d been holding everything in. Julia’s House understood that caring for me was as important as caring for Lily.

Many families are surprised when they find out massage therapy is available. Just one of many unexpected things about children’s hospice care. It’s part of our holistic approach to supporting the whole family, clinically, practically and emotionally. Vanessa treats mainly parents who hoist, lift, carry and hold it together, day after day. “I can feel tension through their skin, in their shoulders, their jaw - sometimes people don’t even know they’re carrying it,” shares Vanessa. And she treats children too, providing a little respite from repetitive movements or a gentle foot massage.

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A friendship neither of us expected Lily started attending Julia’s House pre-school sessions and the nursing team noticed she had formed a lovely bond with a little boy called Jacob. They would lie on the floor together, holding hands in the sensory room, watching the lights or listening to music. Every time I came to collect Lily, she was with her little friend Jacob. And Jacob’s mum Lucy is now a good friend too.

Lily’s milestones Lily is such a happy little girl and has exceeded all the doctors‘ expectations. Her hypotonia means Lily is very floppy but because I’ve been persistent with physiotherapy from very early on – with support from Julia’s House to help obtain specialist equipment – she can sit independently, feed herself and go in the swing at the playground. She loves being outside, seeing the trees and leaves. Julia’s House has also been pivotal in helping us apply to other charities for things like seating, sensory toys and physio benches. Lily wouldn’t be where she is without it.

Learning from each other I recently went to one of the Julia’s House parent day events and came back feeling on cloud nine. It was the conversation – speaking to other parents, hearing their experiences, learning what support and equipment they’ve managed to put in place, the challenges they’d overcome. It made me feel less alone.

Care we can count on

„

The thing that has given me the most peace of mind, above all, is knowing that Lily is cared for by qualified nurses at Julia’s House. I know she couldn’t get better care with all her needs. Without them, I genuinely don’t know where we would be. Their care team have played a massive part in every step of Lily’s journey – and mine.

Every session begins with “how are you?” so Vanessa can tailor her approach, adjusting as she goes, happy whether someone wants to talk or sleep. And the results speak for themselves: headaches go, sleep is restored. One dad couldn’t believe the difference after half an hour. For the families Vanessa works with, touch matters more than they might realise. Sometimes it’s just holding someone’s hands. But that moment of human connection can mean everything.

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“It’s a joy to see a child realise they’re doing something for themselves. I love seeing the children flourish in whatever way they can. We give them an opportunity to do that.” Meet Ashley, Senior Care Team Member and proud Lifelites Champion. He has the enviable job of finding, trialling and playing the coolest and best-adapted toys on the market. In his 16th year at Julia’s House, his commitment is unwavering: to help every child, of every age and ability, realise their full potential through play. Working closely with the wider nursing and care team and our play workers, Ashley helps to identify the toys and equipment best suited to the individual children's needs so they can all join in the fun. Thanks to our partnership with the Lifelites charity, who provide cutting-edge assistive and sensory technology, play can take many different and accessible forms: a magic carpet projecting rippling water, swimming fish or a football pitch across the floor, EyeGaze technology, where children play anything from farm animals to space invaders with their eyes and super-sensitive switches that respond to the lightest touch, so children with minimal movement can enjoy the independence of baking, painting or racing a remote-control car.

”For pre-schoolers, there’s messy play and FoodExplorers and for teenagers the VR, Playstation, Xbox and spacious cinema room. Every small moment matters. From zooming paint across the floor via Thomas the Tank Engine to exploring wobbly jelly for bugs. Play is as important as our clinical care at Julia‘s House.“

h inting wit Olivia pa hospice e t th Ashley a

Ellie the c in cupb raft with oard car Gem er, ma

Blake getting musical at the hospice

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Blake has a whale of a time at the hospice! She loves the soundboard - she's completely mesmerised by it - the music sessions, bouncing on the trampoline in her chair and baking. Blake’s dad, Mark

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12/08/2026 12:18

Grandparents Linda and Lisa at Grandmates

Our Family Support Workers arrange events to give mums and dads a break and a chance to socialise, make friends and even try something new! Like the recent mums' trip to Poole-based natural cosmetics firm, Lush. Annabel Platt, Manufacturing PR & Communications Coordinator, explains what the event meant to the Lush team:

“As a company founded and based in Poole, we are inspired by the work of local charities, community interest groups, and individuals making a difference in our community. Working with Julia’s House to give parents and carers a morning of fun and relaxation was wonderful for our Green Hub team, and we really enjoyed hosting them. Connecting with and learning from the local community and their experiences is invaluable for our team - we would always encourage other businesses to explore opportunities to open their doors and support the work of local groups and charities like Julia’s House.“

When a child has a complex medical condition, the impact ripples out across the family. And when grandparents carry the weight, it’s often quietly and alone. So when grandmother Sue suggested a grandparent support group, our Family Support Worker Emma took up the mantle and Grandmates was born. Over coffee and cake, eight grandparents from Wiltshire gathered at our Devizes hospice. Tissues ready on the table, not because anyone expected tears, but because everyone understood they might come. They shared photos of grandchildren, swapped advice on equipment and funding, and talked openly about grief and the exhausting fight for support. Discussing how systems can feel impossible to navigate.

Everyone had a great time, chatting together and making their very own bath bombs! Two mums shared what the trip meant for them:

“I was looking forward to the Lush tour for weeks. It’s so lovely to have a network of people who go home to a similar situation, because it’s a lonely world.” Blake’s mum, Amber

“It was very interesting and we got to do something practical too - making bath bombs and a facemask. We had a tour of their factory and I learned a lot about the company. It was great to do something different, use my brain and spend time with other Julia’s House mums.” Esmé’s mum, Carly

Philip spoke about granddaughter Penelope, who has a degenerative genetic condition and described the impact on her older sister, who’d learned to become a young carer. “That’s their norm,” he said. “But that’s not normal for other children.” Sue described having a grandchild with a lifeshortening condition as a ‘double kick': “You’re grieving for your grandchild, but it’s also the pain that your child is going through. You desperately want to help them both.” As Sue put it: “There is a relief in sharing with people who understand.“

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Mums Louise and Lisa creating their own Toby the Magic Cow bath bomb

12/08/2026 12:18

Double your donation with the Julia’s House is taking part in the Big Give Christmas Challenge again this year, the UK’s biggest match funding campaign. For one week only, your donations can be doubled, so you can make twice the difference to local children and families - your £20 could become £40 with no extra cost to you! Donate online at donate.biggive.org between midday on 1st December and midday on 8th December. Donations will only be doubled while match funding is still available, thanks to our generous Big Give funders and supporters. Last year, you helped raise an amazing £112,847 to help us care for Skye and families just like hers. Find out more and sign up for an email alert when Big Give goes live:

What's in store this Christmas? The 2026 Christmas season is almost here, and our shops are the perfect place to start looking for goodies. As well as new designs of our popular Christmas cards and diaries, you‘ll find a range of fully recyclable wrapping paper, gifts and decorations. And for animal lovers, we‘ve got Dorset and Wiltshire Dogs and Cats calendars too. Remember, you don‘t have to buy new. There are treasures to be found among our pre-loved finds. In all of our stores you‘ll find great pocket money arts and crafts and toys, the perfect stocking fillers. And at our Creekmoor store, there‘s a wide selection of Christmas homewares, including garlands, faux floral decorations and gifts for your pet. Plus, all the wonderful donated Christmas items. So, make Julia‘s House your one stop shop for Christmas.

juliashouse.org/BigGive2026 juliashouse.org/Shop

Thank you for helping Skye shine Last Christmas, you met Skye – a cheeky, music-loving little girl, who suddenly lost nearly every skill she’d learned due to a mysterious genetic condition. Her family were told to make memories while they could, and they feared it would be their last Christmas together.

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Skye and mum, Sophie, arts and crafting at the Julia’s House Garden Party this summer

Today, Skye continues to amaze everyone with her determination and joyful spirit. “Skye recently celebrated her sixth birthday – a milestone we were never sure we’d reach,” says mum Sophie. “She had a K-pop themed party with all her friends!”

12/08/2026 12:18

Our Xmas tree collection is back! Book to have your real tree collected by our friendly team at the end of the festive season and we’ll recycle it for you. You can choose to give a donation of your choice. Book before Tuesday 5th January 2027.

juliashouse.org/XmasTrees

Festive artisan market

Sing with us Christmas Carols at Christ Church, Swindon Mon 7th Dec, 7pm Celebrate the start of the Christmas season with carols, mulled wine and mince pies at Christ Church, Cricklade Street, Swindon.

Tickets: £10 adults, £5 Children, Under 5s – free

The Julia’s House Big Community Sing St Peter's Church, Poole, Sat 12th Dec, 6.45pm A big Christmas sing-a-long at St Peter’s Church in Parkstone, Poole featuring Cadence vocal group, the Julia’s House choir and a special guest.

Tickets: £16.50

Discover one of a kind, handmade gifts. Our festive artisan market will be at Bromham Community Hub (SN15 2JB) near Devizes on Sunday 22nd November 2026 from 10am to 2pm. Treat yourself to homemade cakes and hot drinks in our pop-up cafe.

To find out more visit: juliashouse.org/ChristmasMarket

I was never alone when my mum

held my hand

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Book tickets at juliashouse.org/Carols2026

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

12/08/2026 12:18

9 Welcome to two new children at Julia's House, Oscar and Neilia

Oscar having fun at his first hospice respite session

Getting to know the ducks – Neilia on her first visit to the hospice

Ted on a experie canal boat n Family ce with S Worke upport r, Emm a

Goodbye and good luck We wanted to say a special goodbye and good luck to the young people transitioning to adult care this year as they turn 18. For Ted, Noah, Joseph and James it has been an absolute pleasure to care for and support you and such a positive experience for us all. We’ve got some amazing memories and everyone here, especially your nurses and carers, wish you all the best as you transition.

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18th ting his nd carers celebra sa e rs u Joseph n with his birthday

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could help towards fun, food and games for a sibling sleepover

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could pay for a month’s supply of essential clinical care equipment to help keep our children safe

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could provide a relaxing complementary therapy session for an anxious and exhausted parent or other family member

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12/08/2026 12:18

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, 25-26 East Street, Wimborne, Dorset BH21 1DU. Registered with The Gambling Commission under the Gambling Act 2005 (gamblingcommission.gov.uk) Registration No. 000-039939-N-319913-011. 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).

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