Julia's House Autumn Newsletter 2024 by JuliasHouseChildrensHospice

What’s inside

Fundraising Superstars

Families and supporters pushing their limits to make a big difference

James’ Story

The Julia’s House teenager with an infectious laugh

Meet The Children

Smiling, and having lots of fun at the hospice Autumn 2024

Dear Supporter

As you may have seen from media coverage earlier this year, Julia’s House is urgently seeking more funding from the Government, which only contributes 8% of our income. With rising costs, like many hospices, we are now in a budget deficit.

At the time of going to press we still don’t have any commissioning contract from the NHS Wiltshire Integrated Care Board (ICB) and we have been offered a 0.6% increase - a real terms reduction - on our contract from NHS Dorset’s ICB.

More significantly, the £500K grant we receive via the ICBs, funded by NHS England, is currently due to end in March. That would leave just 3% of our income coming from Government, which is ludicrous.

If you would like to help, please write to your MP pointing this out, and ask them to write to the Health Minister to ensure that the NHS England funding is not cut.

The more we all help to raise awareness of the funding crisis for children’s hospices, the more the new Government will have to take notice and take action.

Martin Edwards Chief Executive,

House

Making friends and hanging out

Every child loves to laugh, explore, play, and have the freedom to be themselves.

Thanks to your donations, our super Sibling Workers plan a fun-packed year for brothers and sisters, so they can do just that – have the best time with other children who truly get them.

From archery and abseiling to discos and pampering, there’s something for every child to enjoy. Popular highlights of the year for our siblings are the two-night residential stays and outdoor activity days that we organise at different centres across Wiltshire and Dorset.

“The children all really enjoy it – it’s a chance for them to have fun in places they may not be able to access with their poorly sister or brother,” says Julia’s House Sibling Worker, Tracey.

For some children, it’s the first time they’ve been away overnight from home, so it’s a big step and a very memorable experience. They get to try a new and

exciting activity, and they can take a breather and relax from their busy day-to-day life... although we’re not sure the 8am wake-ups are very relaxing!

Tracey says, “The group sibling sessions are also important because of the peer support the children gain from their time together. As their Sibling Workers, we can empathise and be there for them, but we don’t fully understand what they’re going through like the other children there will do. They look out for each other and they’re really welcoming to any new siblings who join. It’s lovely to see them making friends and gaining confidence.”

Feeling all warm and fuzzy

We were all left feeling warm and fuzzy after a visit from the animals at Muddy Puddles mobile farm earlier this year.

Along with lop-eared rabbits and fluffy guinea pigs, we welcomed a goat, sheep, chicks, and even a few wellbehaved ducks into our Devizes hospice garden. It was such a treat for the children (and care team) to have the chance to meet, pet, feed and hold the animals in a very relaxing and easy setting for them. The animals loved all the attention too!

“I fell in love with the goat and wanted to take him home,” says Senior Care Team Member, Helen Hunter.

“The afternoon was very interactive and relaxing for everyone – animals just make you feel better, don’t they?” She adds, “It was lovely to have something different coming into the hospice for the children to

enjoy, and when you see the smiles on their faces you know it’s all worth it.”

Because of their complex care needs and medical equipment, it can be difficult for the children we care for to visit a busy farm park. But they would love to have that experience. Your donations help us to bring joyful childhood moments (like hugging a goat!) to families in a place where they feel truly safe and supported.

Shout-out to our Julia’s House Family Fundraising Superstars!

We’d like to say a big thank you to all of the Julia’s House families and team members who have taken on bold new challenges to raise vital funds to support our care. We love our fundraisers, and we love our families, so this is a page to celebrate both!

Spidey Sensation

Fundraising star Carmela took on a ‘Superhero Jurassic Journey’ to raise more than £6,000 for Julia’s House this summer.

The 10-year-old, who has muscular dystrophy and is cared for by Julia’s House, walked and wheeled 100 miles in just two weeks along Dorset’s Jurassic coast. Part-way through her mission, our Patron Martin Clunes shared a special good luck video for Carmela all the way from Greenland!

“Congratulations to you for doing this,” says Martin. “Julia’s House is the best possible cause you could be doing it for. And good luck – go girl!”

Mum, Lucy, joined Carmela on the walk along with their dog, Tinker. She says, “Carmela faces so many challenges in her life, but she’s never let them hold her back. She’s raised thousands of pounds for charity and received lots of awards for her bravery and fundraising efforts. This year, we both felt we really wanted to do something for Julia’s House as we know how little Government funding they receive and how they rely on public donations.”

£20,000 raisedJulia’sfor House

£6,000 raised for Julia’s House

Cycle for Katherine

Dorset dad Charles has cycled around the Isle of Wight with friends to raise an astonishing £20,000 for Julia’s House, in tribute to his daughter Katherine.

Katherine was born with a rare genetic disorder called Cockayne syndrome, which causes premature aging, a short stature, sensitivity to light and other developmental delays.

For around 12 years, Katherine and her family were supported by Julia’s House. And when Katherine sadly died last year, aged 19, the idea of doing a charity ride in her memory was formed.

During and beyond Katherine’s life, the family have been keen fundraising champions for Julia’s House and have constantly supported our care.

raised£500 Julia’sfor House

Oscar’s Superhero Run

Big brother Jack dressed up in his favourite superhero outfit to whizz round a 5K parkrun this summer, raising nearly £500 for Julia’s House.

Nine-year-old Jack completed the run with family and friends in memory of his little brother, Oscar, who died three years ago, aged just three years old.

Mum Abbie says, “When Oscar died, we wanted to spend some time with him, and Julia’s House took us in. They let us stay in their hospice so we could be close to Oscar, fed us, cuddled us, spent hours talking to us, holding our hands and helped us navigate the early days through the worst grief possible.

“Three years on they’re still supporting myself and my eldest son Jack. They are such wonderful people, and we wanted to give something back.”

Don and Stuart’s epic car challenge, from Peking to Paris!

Long-time supporter, Don Henshall and his brother, Stuart, recently embarked on a 5-week endurance rally in a 1964 Morris Cooper S, from Asia to Europe, all in aid of Julia’s House.

Five weeks, eight countries (and a micro-state), seven border crossings, and fourteen-and-a-half-thousandkilometres across deserts and mountains, along the biggest continuous land mass in the world! They joined other classic cars: 1925 Chilean taxi, 1968 Rolls Royce and Citroën DS and finished 28th out of 75. They received a silver medal – awarded to those with cars that started and finished every day at authorised points.

They generously matched all donations, raising an amazing £28,559 in total for Julia’s House.

Don said: “The Mini has been amazing. The amount of love shown to it everywhere by everyone is fabulous... it was their first car, or they learned to drive in one, for others it’s the Italian Job or the Mr Bean connection, or a great little competition car in circuits and rallying from ‘60s and ‘70s. Although a tough challenge for us personally, and a 60-year-old car (8-10 hours driving a day across all sorts of roads and conditions while keeping the Mini running), it is nothing compared to the challenges the families Julia’s House supports face each and every day.”

£28,559 raisedJulia’sfor House

Going to great heights! Team Tenzing (Tom,Will & Mike)

In February, a team of intrepid fundraisers took on the ultimate winter sports challenge in aid of Julia’s House. In just four days, Team Tenzing, Tom, Will and Mike, ascended the height of Everest (8,848m), the world’s highest peak.

The adventurous trio climbed 2500m on skis in the Swiss Alps each day, burning a daily average of 10,000 caloriesthe equivalent of running three back-to-back marathons!

Together, Team Tenzing raised an incredible £8,035 for Julia’s House, enabling us to continue providing essential support to local families.

£8,035 raisedJulia’sfor House

James’ story

“Everything

is a battle when you’re caring for a child with complex needs, like James,” says Dad, Nigel. “But with Julia’s House - they make it easy for us. They help us all, however and whenever we need their support.”

“When James was born, the only newborn test he failed was the hearing test on one side. It wasn’t until he was around three months old that doctors discovered James was completely deaf. It was like a punch in the stomach. We weren’t expecting it,” Nigel continues.

Sadly, further investigations would deliver more devastating blows to the family – news of a rare and incurable form of cerebral palsy called polymicrogyria that only around 80 children are diagnosed with in the UK each year. “It means ‘too many folds on the brain’, so the message takes so long to get to where it’s meant to be, it doesn’t always get there,” explains Nigel.

“Over time we’ve learned more about what James can and can’t do. It began with, ‘If he can’t sit unaided by two, he’ll probably never walk,’ and it went from there. Each time you discover something… you grieve a little bit. And then you move on because what else can you do really?”

Today, James needs constant care - day and night - for his complex condition. The teenager can only communicate by eye gaze and sounds and can’t walk due to scoliosis of the spine, which causes him agonising pain. He also has epilepsy which is kept under control with medication and has recently been fitted with a feeding tube.

James, aged 15 years with Dad, Nigel (main carer), Mum Ciara and Sister Seren (17)

At first, Nigel and Ciara felt as though James’ condition was manageable. But over time, his health has taken a heartbreaking downward spiral.

“I used to push James in his wheelchair, and we’d run and laugh that we were paralympic bobsleigh training. When James is well, he’s great – he’s the best. He’s a really engaging, happy, cheerful boy - has a big smile and a really cheeky sense of humour. His laugh is infectious.

“However difficult James was when he was younger, if someone had given me a magic wand and I could have changed him, I wouldn’t have done it. Because he has his own personality and his condition is part of who he is. But over the last couple of years, he’s gradually been going downhill, and we’ve had to have those end of life conversations. If I could wave a magic wand and change him to a healthy child now, I would.”

“It’s great that our Julia’s House nurses can come to our home. They’ve really got to know James.

He has also started to go into hospice sessions, and absolutely loves all the sensory lights and attention. He gets so much out of being in that special setting that isn’t home or school.”

There for the siblings

Nigel and Ciara are grateful to Julia’s House for the time they’ve been able to spend with their daughters, and recently went to watch 17-year-old Seren in her county rugby game along with their older daughter, Nia.

“That would never have happened without Julia’s House,” says Nigel. “And it’s so important to have that time to dedicate to Seren. She’s been brilliant with James throughout her life, and you only have to see the way he looks at her to know how much he adores her. But it’s always been about James all her life. And that’s tough.”

Time to re-connect

A recent overnight session at the Julia’s House hospice in Devizes gave Nigel and Ciara their first night out alone together in six years.

“Julia’s House gave me the chance to be a husband, and not a carer for the night.”

“James had been in hospital that week, and we thought that we’d have to cancel but the Julia’s House team said if he was well enough to come out of hospital, they would still take him. I hadn’t washed or shaved because I’d been in hospital, but I’m so glad we decided to go ahead with it. It was so important to have that time for us… and we could relax because we knew James was in safe hands, having the most amazing care.

Winter anxiety

“December is the beginning of the winter virus season and the most dangerous time for James. Something as simple as a cold could be catastrophic. Two winters ago, James developed severe respiratory issues. We were honestly looking forward to having Christmas Day in hospital with James because just days before we thought we were going to lose him.

“People always say that it will be respiratory problems that will get James in the end. And because of the past few winters, we do worry about what could go wrong this year.

“James is in a good place at the moment, so we’re hoping for a good Christmas at home all together. James loves all the lights and the trees at Christmas and I still get dressed up as Santa every Christmas morning because James loves it so much.”

Working together to support families

Starfish Team

Starfish is a working partnership between Julia’s House Children’s Hospice, University Hospital Dorset (UHD) Children’s NHS Nurses, (UHD) Paediatricians and Gully’s Place. Starfish enables families to have essential choices about where they spend their final days together with their child

When it comes to providing end of life care for a child or young person who has a life-limiting condition, being able to give a family a choice about where they receive care is a priority.

Whether in hospital, at a hospice or in the familiarity of a family’s own home, this choice can only be possible when organisational boundaries can be crossed. The Starfish team has evolved especially for this purpose. Starfish is a collaboration that enables a shared workforce, shared resources, facilities, knowledge and skills that support the whole family every step of the way.

Starfish aims

Deliver best possible care in the place that feels most comfortable for the child and family

Flex to meet the whole family’s changing needs

Provide proactive, responsive and timely support

Have one primary contact across all teams

Share expertise to deliver best care

Nursing and medical staff sharing knowledge, skills and support with each other

Support the whole family

Larger team skilled to deliver care in any setting

Hannah Wilson Lead Nurse at Julia’s House

“Collaborative working and being part of the Starfish team is something that has evolved and grown over time and I feel very proud to be part of this partnership,” says Hannah Wilson.

“With the agreement in place it means that we are able to jointly work in partnership with our UHD colleagues, to ensure children, young people and their families have informed choices in end of life care, whether this is at home, in the hospice or in hospital.

“This multi-disciplinary approach ensures that nursing, medical, pharmacological and emotional support is also offered and provided to families supported by the Starfish team.

“As well as the nursing and medical support, at Julia’s House we have a Family Support Services Team that care for the child, young person and their whole family. This team comprises family support workers, sibling workers, a social worker, and complementary therapists. Counselling can be provided at the point of referral and moving forward, whenever it might be needed, in Poole and through Julia’s House.

“As a Starfish team, we are able to be responsive over a 24-hour period to a family’s needs in any particular moment, as they are constantly changing, and every day is so different.”

Beth Squirrell

UHD Children’s Palliative care nurse

Josie Roberts

UHD Clinical Lead for Children’s Community nursing services & Palliative Care

“I’m passionate about working together,” says Josie Roberts, “getting to know each other, building trust and supporting each other as a team. We are a wider workforce combining our knowledge and a variety of skills to enable the best care possible for children and their families. Collaboration is essential and Starfish aims to foster a culture of shared responsibility and mutual support.

“During such challenging moments, families going through end of life care with their child deserve this individualised support. What they truly need are options and to be allowed to choose where their child spends their final days. Without our collective efforts, these vital choices just wouldn’t be available.

“Julia’s House and UHD nurses support the families together as one team wherever the family choose to be. As members of the Starfish team, we collaborate seamlessly across all areas: Julia’s House, UHD, the ward, Gully’s Place, and in families’ homes. We serve as a unified point of contact and build relationships with the family - so that they have a familiar face there for them, offering round-the-clock support and medical guidance.”

How Starfish were there for Charlotte and her family

“The team from Julia’s House and the Poole Palliative Team of nurses and doctors worked really well together and were very attentive of Charlotte’s needs,” says Mum, Eileen. “Despite her being so ill, they treated her like a baby and not just a patient who was receiving end of life care.

“They allowed us to do all we could to look after our little girl ourselves at home but were always nearby for additional support and stepped in when it became time for us to just be there with Charlotte in her final hours - without having to worry about her medications. We could trust that they were doing everything

they could for her - something that was very important to us as we had spent 15 weeks of Charlotte’s short life in hospitals where we met many different doctors and nurses.”

Eileen continues: “They were brilliant in helping us make memories, we got to take Charlotte to the beach, something we didn’t think was possible. They took photos and even picked a couple of seashells for us as keepsakes. Not only do we have the memories of that morning to cherish forever, but we also have something to share with her little sister… we take a seashell home for Charlotte every time we go to the beach.”

Charlotte

Meet the children

Our Barbie-loving Sienna!

Along with all things Barbie, 15-year-old Sienna absolutely loves animals and spending time with other children at our hospice.

Sienna was born with a rare condition called Dravet Syndrome, which causes her to have uncontrollable epilepsy and learning difficulties. Anything from a slight temperature to over-excitement can trigger a severe seizure in Sienna. When this happens, she must have immediate emergency medication and support from paramedics.

Because of this, Sienna needs close supervision at all times. She even has her own service dog, called Sunny, who is specially trained to sniff out signs of a seizure and give reassurance to both Sienna and her family.

Sienna used to have seizures almost every week, but now her new medication is helping to make her condition more stable and keep her out of hospital, which means lots more time for fun!

Always a smile from

Isaac!

Isaac always has the biggest smile on his face when he’s at our hospice!

He loves to keep his nurses and carers busy, coming up with imaginative games and getting all the cars and sensory games out of the cupboards.

Isaac was born with a severe condition called Zellweger Spectrum Disorder, which affects him physically and unfortunately causes him to lose his abilities over time.

Now aged 10, Isaac’s vision is worsening, and he uses a walking frame or wheelchair to move around. The youngster also has profound hearing loss, but thankfully he can hear all the songs and laughter at the hospice because of his successful cochlear implant.

When the sun comes out, Isaac likes to play outdoors with his friends, and he recently enjoyed meeting farm animals and some strawberry planting (and picking!) in our Devizes garden.

You can’t resist Esmé’s giggle

Three-year old Esmé has a wonderful time at the hospice with nurse, Gemma.

Esmé enjoys the garden swing, stories and our special sensory equipment with lights and sounds. She does foot painting too, adding to mum Carly’s collection of Esmé’s amazing artwork.

Esmé has a genetic mutation called SCN8A epileptic encephalopathyit’s very rare with less than 1000 cases worldwide. Her condition means she has nearly constant seizures and has to be monitored 24/7 – Carly gets very little sleep, so Julia’s House respite sessions give her a much-needed break.

When Esmé was at her most poorly and not smiling or laughing for several months, Carly used to have to play a recording on her ‘phone of her daughter laughing, so she could remember just what it was like. But now Esmé’s giggle is back. And it’s definitely infectious!

Christmas is coming...

Tuesday 3rd December, 7pm-8pm: St Mary the Virgin, Edward Road, Dorchester

Wednesday 11th December, 7pm-8pm: Christ Church, Cricklade Street, Swindon Join us for Christmas Carols Don’t fir-get

Signing up for our Christmas tree recycling collection is a great way for us to help you and for you to ‘branch out’ and help local children and families. You have until 11.59pm on 7th January 2025 to book your collection and specific postcodes apply. Thank you for your support.

Tickets available at juliashouse.org/carols juliashouse.org/ChristmasTrees2024

Double your gift

Julia’s House is taking part in the Big Give Christmas Challenge. It means £10 donated to Julia’s House could be worth £20!

Donate at donate.biggive.org between midday on Tuesday 3rd December and midday on Tuesday 10th December and make double the difference to Julia’s House families.

Twice the number of hospice care sessions, twice the benefits of the sensory room and twice the time with friends, nurses and carers.

Donations will only be doubled while matchfunding is still available, which has generously been donated thanks to a mix of special Big Give funders and supporters. Thank you!

Once again, for one week only, your donation to Julia’s House could be doubled, so that it has twice the impact.

Last year, with your support, our Big Give campaign raised an amazing £80,000, helping local families like Addy’s receive the care they need to embrace every moment together. Find out more and sign up for an email alert when Big Give goes live at:

juliashouse.org/Big_Give_2024

We’re launching a new campaign this autumn to show what a life-changing difference it makes to our care when you leave a gift in your Will to Julia’s House. The new ‘Always There’ campaign reminds us of the important people who have always been there for us in our lives - mums, dads, brothers, sisters, friends - and how by leaving a gift in their Will, they are now always there for the children and families at Julia’s House. It stars William, one of the children we support in Dorset, who you’ll see smiling and laughing in local newspapers and magazines, on bus routes and on Facebook.

Why don’t you let us know who was always there for you? #alwaysthere Find out more about how to leave a gift in your Will, visit juliashouse.org/alwaysthere Who was always there for you? always there

It’s going to be mer-mazing

The countdown is on for our Great Tail Trail next Spring (5 April-1 June) - a free, fun and colourful sculpture trail across Bournemouth, Christchurch and Poole.

The Trail will feature giant-sized mermaid tails individually designed by local artists and sponsored by local businesses including Organix, AFC Bournemouth, LV=, Vitality (the Trail’s Official Wellness Partner) MSP Capital, Bournemouth Water, The Waterfront, Poole BID, Castlepoint and many more.

We’ve been out and about over the summer fishing for the best locations for sculptures as well as short-listing some amazing local artists to bring to life the giant mermaid tails. Schools and community groups can get involved too and paint their very

own Tiny Tail which they get to keep once the trail is over. Sign up now as places are limited greattailtrail/tinytrail

Save the dates in 2025! Don’t miss the Trail’s special Farewell Weekend on 14-15 June and Grand Auction on 20 June, where all the giant mermaid sculptures will be sold to raise vital funds for our care – it could be your chance to catch your very own mermaid tail!

Find out more greattailtrail.co.uk

Give a unique tribute to someone special on The Great Tail Trail

One of the giant-sized sculptures on next Spring’s Great Tail Trail is set to be something really fin-tastic. Our Tail of Tribute, entitled Waves of Love, gives you the chance to pay a unique tribute to someone special in your life by having their name featured on a mermaid tail, specially designed by artist, Judy Guillery. It could be someone you’ve loved and lost who is still close to your heart, or someone who is still with you. Someone who has faced tough challenges or has helped you through yours. You might want to acknowledge an amazing brother or sister, a partner who’s been your rock, an always there mum or dad or just a great friend who has never let you down. We all have people

in our lives who deserve a special thank you and this is your chance to make a unique tribute and show them what they mean to you.

The names of loved ones will feature in hand-painted fishtail ‘scales’, which will cover the whole sculpture in a spectacular, eye-catching design. Waves of Love will be on display throughout The Great Tail Trail, so you will be able to come along to the trail to spot your special someone’s name. And it will be a wonderful way for everyone to see how special they are too!

We have just 600 tribute scales available at a donation of £25 for each scale, so your tribute will also be a tribute to our care, helping us to continue to be there for local seriously ill children and their families.

Just complete the form opposite with the details of your special someone

How your support is helping William

You may remember fun-loving William from a few years ago. We shared his story back in 2019 when he was seven years old. He’s 12 now and we recently caught up with mum, Tania, to find out how he is getting on and how the whole family is benefiting from the help of Julia’s House Family Support Services.

“As a family, Julia’s House supports us in so many ways… the Family Support Service has been a real advocate for William’s needs and has championed charity support for muchneeded equipment and things that will increase the enjoyment in his life.”

“William was born with the arteries of his heart the wrong way around. At just one day old, he had emergency surgery and open-heart surgery a week later,” says mum, Tania.

“At age 16 months old, we were told the devastating news that William had sustained brain damage due to a complication from the surgery. Shortly after, he developed severe, uncontrollable epilepsy, which caused secondary brain damage. He experiences seizures on a daily basis.

“William is 12 now – in a different life he would have started secondary school this month,” explains Tania.

“His global developmental delay impacts every aspect of William’s life, his access to the world around him, and how he interacts with the people he loves. It leaves him with no verbal communication. He likes to be out of his wheelchair and to explore but his mobility, coordination and continued growth make this tough for him. Despite this, William never gives up and moves about whenever he can; he can sit on the floor to play with his favourite noisy toys, and on good days can take a few steps with support.

“Having Julia’s House in our lives allows me and Pete to be parents, not carers, and to enjoy time with William beyond his care and medical needs. It also gives us time to focus

on William’s little sister Eleanor and give her the precious time she deserves and wants. On the days William visits the hospice, she can have our full attention and love without interruptions. Eleanor has really enjoyed attending the Julia’s House sibling events, which also help her to feel special and included.

“Without Julia’s House, I feel the daily demands of medical needs, emergency care, limited sleep, and no time to breathe would become overwhelming and threaten the balance we hold on to so desperately.

“To have William’s nurse Jen checking in on us is reassuring and sometimes needed more than we realise.”

Thank you for your continued support

A younger William, with mum Tania, dad Pete and ‘little big sister’ Eleanor

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Edwards. Julia’s