Julia's House Spring 2024 Newsletter

What’s inside

Family Support Services

Completing a picture of support for the whole family Finley’s Story What Julia’s House means to our cover star and his family

Welcoming you to some gardens of beauty this summer Spring 2024

Dear Supporter

Your regular newsletter is now on thinner paper and in a smaller envelope: a small change to save money in the current climate.

In this first edition for 2024, we report on all sorts of numbers achieved last year – how many thousands of hours of care and so on. But sometimes the truest measures are very different.

These are some of the words used by families describing the end of life care we gave to their child: ‘tranquil’, ‘peace’, ‘home’ (at the hospice), ‘amazing’, ‘above and beyond’, and ‘acceptance’.

It’s extraordinary that families in grief can find the space to tell us these things. It says that we got right the one thing we can never do for them again.

Other things happen many times, and likewise can’t be measured but mean the world: a child beaming with happiness in our care; the sound of music and laughter echoing down the corridor from the hospice playroom; a sibling forgetting their worries on an outing with other kids just like them; or seeing the stress disappear from an exhausted parent after a sleep or a massage.

This is about quality of life, no matter the circumstances. It’s what we do best.

Ready, Teddy, Go!

Our lovely Patron, Chris Jarvis, visited the Dorset hospice earlier this spring to back our Big Teddy Takeover fundraising campaign for schools.

Photographer: Phil Abraham

The TV presenter and panto star brought along Stuffy the soft toy, which features alongside Chris in the CBeebies programme, Show Me Show Me.

To help raise vital funds and awareness for Julia’s House, we’re inviting schools and nurseries to host a Big Teddy Takeover to mark this year’s Children’s Hospice Week (between 17 - 23 June). All you need to do to take part is bring in a cuddly toy and a £1 donation for Julia’s House on a day of your choice in June.

“Julia’s House continues to be the most precious sanctuary for our most remarkable young people and their families. Everything about the place is uplifting and inspiring; and everyone who works there brings enormous joy,” says Chris.

“However, funding all the amazing resources, activities and the building itself is no picnic, and that’s why we need to call in the teddy bears who make picnics truly awesome. Please get involved with your little ones! A little teddy can make a big difference.”

The Big Teddy Takeover is kindly being sponsored by the Wiltshire-based legal experts, Awdry Law.

Celebrating a Centenary for Des!

Supporter Des Curtis, has funded the Julia’s House family panto trip for the last five years, bringing smiles and laughter to the children.

He moved to Dorset 40 years ago for a quiet retirement, but has stayed busy, devoting his time to fundraising for charities in his local community. We wanted to say a huge thank you to Des for all his support for Julia’s House and congratulate him on reaching 100 years young!

An RAF veteran, businessman and author, Des puts his longevity down to having a worthwhile purpose in life and taking interest in the things around you, “The panto is a wonderful way to brighten a child’s life. It is a spectacle! I enjoy going too with my daughter.

“It gives me immense satisfaction to fund this activity and know that I’m making someone’s life better or happier in some way.”

One of our families shared a special thank you too, “Thank you so much for the tickets! We’ve just got home and really enjoyed the whole show. I didn’t know how my daughter would do or if she would enjoy it or even stay awake through it, but the sparkly-ness, coloured lights everywhere and singing was perfect. She was vocalising the whole way home and as we’ve been getting ready for bed, which is a very clear sign for her that she’s had a great time!”

Kindly sponsored by

Finley’s story

“When you’re in hospital, you are on constant survival mode trying to make sure your baby survives. You just can’t even imagine what the future is going to look like. But the future is really where Julia’s House comes in; the point at which you get out of hospital and realise how much support you need when you’re at home.“

We were at Keith’s brother’s wedding the day before our 20-week scan and everyone was taking bets on whether Finley was going to be a boy or a girl.

But at the scan, Keith and I could see straight-away that there was something under Finley’s chin and over the next few minutes, different members of the medical team came in to look too. They told us that we would need to come back in a couple of days and see someone more senior. Although we found out we were having a boy, it just felt such a non-event after everything else we had been presented with that day. We were terrified.

An agonising wait

The two-day wait was unbearable. Eventually when we saw the senior consultant we were told it could be chromosomal or a tumour, but at this stage they weren’t sure. Within that same week, we received the diagnosis that Finley had lymphangioma – a rare malformation of the lymphatic system that causes lymph fluid to collect in one place forming cysts. We left there holding some leaflets we’d been given, and I remember thinking how the experience was so unlike anything I’d anticipated it to be. That was hard because we had thought about having a baby for a long time.

Finley’s mum, Gemma

Finley (two) with Dad, Keith and Mum, Gemma

When Finley was born after an emergency c-section, he had to be resuscitated straight away and I held him for what felt like 30 seconds, before the medical team whisked him away to the Neo-natal Intensive Care Unit (NICU).

He was on and off oxygen while they tried various things to stabilise him and later, he had surgery to take out a lot of the mass from his neck and throat to help improve his airway. But it was at the point Finley had a tracheostomy placed in his neck that our lives changed forever, as it’s this that makes him a disabled child. As well as making him prone to infection, it comes with so many implications we couldn’t ever have imagined at the time.

We never expected to spend six months in hospital or spend our first Christmas together next to our baby on a ventilator.

During our time in hospital, we saw many babies and young children that didn’t make it. I kept getting a sense that we were existing in this underworld, this parallel universe that has always been there, but until you are embroiled in it yourself, you wouldn’t know.

Julia’s House helps us navigate a different world

We first met with Julia’s House nurse, Jen, to talk about what kind of care would suit us best and agreed it was the home visits, as we were cautious about Finley from an infection point of view. As things are progressing, we’re keen to do more hospice sits, so Finley can mix with other children who are medically complex. We want him to understand he’s not the only one and he can build some friendships as well.

Jen and Amy are brilliant. Every time we see them, they say, “you know where we are, just contact us.” They are both good listeners and are always thinking about practical ways they can help us. We’ve been directed to the Julia’s House social worker who helped me with Finley’s Educational Health and Care Plan (EHCP), and to the counselling service to help us come to terms with

the mental health impact of the first two years of Finley’s life. The complementary therapy is so valuable too and is something I’d never have arranged for myself because I’d have felt guilty leaving Finley. I’m starting to realise how important looking after yourself as a parent is and that there is no need to feel guilty.

As a parent of a child with a complex medical condition, you find yourself in this different world. Your friends, unless they’ve been through something similar, can’t really relate to you in the same way, so you can find yourself a bit of an outsider sometimes. But at the Julia’s House events and family days you meet other parents who are going through the same thing as you and the impact of that is huge.

Keith and I don’t get any time on our own, so when we do have the nurses and carers to look after Finley, we make sure we do something special together, get out of the house, go for a nice walk around the Purbecks, things we can’t do with Finley and that other parents might take for granted.

There is no cure for lymphangioma; it’s not going to go away. Finley is on medication to try and reduce the size of the swelling, which we think is helping and there’s a new drug therapy potentially available in the next five years which is looking promising. Finley’s had multiple surgeries and all the ongoing blood tests, medicines, checks and reviews have become part of our routine for the rest of our lives. He’s very brave, but obviously doesn’t like it and that can be quite upsetting.

Finley with carer Sarah

Photographer: Jon Bolton

Finley loving his time with carer Sarah and nurse Jen

Beth Whitworth, Lead Nurse of the Family Support team at Julia’s House describes each area of the service as a vital puzzle piece, that when joined together completes the whole picture of support for each family member.

“The Family Support Services surround the whole family because the impact of caring 24/7 for a seriously ill child affects everyone. Each area has to be responsive, and we work together to provide the family with what they need in that moment in time. The puzzle pieces when put together is like a hug around the whole family.”

Family Support

Time is precious for the families we support, so we take the burden away of applying for Cost of Living grants and other financial support for families - which can be so time consuming and stressful and some families aren’t receiving the help they are entitled to. Recently, we helped source funding for a special trike for ten-year-old Jack which is helping him keep mobile and is beneficial for his overall health, and now he is planning to do a sponsored trike ride to raise funds for Julia’s House.

The emotional support that we offer parents is vital too, so we arrange activities and events throughout the year. We can’t change all the tough times –but we can be there to listen to parents and acknowledge what they’re going through.

“Our role is ever-evolving and every day is different and we absolutely love making a difference for the families we support.”

Melissa Farmer (Family Support Worker)

Emotional Health and Wellbeing/ Social Work

Emotional health and wellbeing support is essential in helping each family member to maintain a healthy balance and cope with each difficult day. This vital service encompasses therapies such as counselling and play, art and music therapy.

“I’ve always been passionate about supporting individuals - improving care with emotional health and wellbeing of families and finding creative ways to help them channel emotions.”

Michelle Petford, Emotional Health Wellbeing Practitioner.

Social work supports families with safeguarding, general advice, guidance, and signposting to professionals.

Family Support Completing

Together the puzzle pieces are like

Family Support

Emotional Health & Wellbeing/ Social Work

Complementary Therapy

“Losing a child is the worst thing Being able to offer all that the provide from a child’s initial journey, is a privilege and Beth Whitworth, Family Support

Family Support Workers, Melissa Farmer & Emma Blackmoor at the family garden party

Beth Whitworth, FSS Lead Nurse

Jack’s funded trike

Photographer: Jon Bolton

Support Services

the picture

like a hug around the whole family.

Complementary Therapy

Massage can help with pain relief for a child, sore muscles for a parent and can also aid relaxation and sleep –something many parents struggle with.

Sibling Support

Our complementary therapists’ wide range of treatments help family members relax and unwind. It’s both a treat and a treatment benefitting the individuals physical, psychological and emotional needs, whether in the hospices or at home.

The new ‘Villa’ at the Dorset hospice is, “A calming space away from busy day-to-day lives, where families will leave feeling pampered and peaceful.”

Dominique Lewis-Jacob, Complementary Therapist.

Sibling Support

Having a brother or a sister with a life-limiting condition means siblings have to witness and deal with a lot of things other children, thankfully, never have to face. It is easy for them to get worried or frightened and to feel overlooked or isolated. Each sibling has a dedicated sibling worker adapting to each brother or sister’s unique situation - to spend time with 1-1 nurturing emotional needs or on social events that enable peer support and friendships.

Overnight activities allow respite from being young carers. At a recent Super Sibling sleepover they enjoyed a pamper with a foot spa, and making and applying facemasks.

Play

Play is essential for a child’s development and encourages peer-to-peer communication, building confidence and resilience and self-esteem. Our play workers tailor play to each child’s needs, interests and abilities and it is a welcome relief from clinical care and a chance to simply have fun in a safe environment.

Play Worker, Lisa, recently spent some time with Jack in the sensory room, after singing nursery rhymes during a hospice session. Jack, loves trains, music, stories, arts and crafts and messy play activities.

“It’s my job to learn how a child communicates – whether that’s verbal or through a simple hand or eye movement – and giving them the time they need to let me know what they enjoy most. We want to give children control over their play and provide opportunities they might not get at school or at home.”

Lisa Magill

Pictured, sibling, Tom at the Super Sibling sleepover

Play Worker, Lisa Magill, with Jack (10)

Photographer: Jon Bolton

Photographer: Jon Bolton

Photographer: Gareth Iwan Jones

A big thank you to you!

Thanks to your wonderful support, our 20th anniversary year in 2023 saw more care provided by Julia’s House in your community than ever before.

43% of our care was in the community: 57% in the hospices

hours of family support for parents, children and siblings

brothers and sisters received sibling support

we cared for 143 families respite care sessions were out in the community 1,800+

250 hours of end-of-life support for children and their families

children had a session with a play specialist 106

47 children were able to have a fun sleepover at our hospices

2,400

respite sessions were provided in the hospices

17 families received bereavement support

543 dedicated 1-2-1 sessions meant devoted time for 98 brothers and sisters 1 -2- 1 90%

hours dedicated by Family Support Workers to support families - including help with the cost of living

hours of respite care were delivered, including over 1,500 hours of overnight care 13,000

of children have such complex needs that they need 2 members of care staff present at community respite sessions

You are part of our future care

Please consider a gift in your Will

The children we support are seriously ill, but they need the same things all children need – smiles, laughter, treats, hugs, encouragement, kindness, fun and friends. You can always be there to give the children at Julia’s House everything they need to discover their world and live their lives to the full. And it costs you nothing now.

What our families say:

‘’Few people realise all the little extras that Julia’s House does, but they all add up to such a difference in how you are able to cope.’’

“No matter how strong you are, it’s not until you’re put in a position like ours that you realise how fundamental children’s hospices like Julia’s House are for your wellbeing.”

“Respite played a vital part in keeping our family from falling apart at the seams.”

A gift in your Will means we can wrap our arms around the whole family. Will you be part of our future care and help to spread the word with friends and family?

Our costs are increasing along with the demand for our services, and we need to ensure we can be there

“We felt so isolated and alone. Julia’s House was a lifeline.”

for every family that needs us for the next 20 years and beyond.

Gifts in Wills account for 50% of all our fundraising income and are vital to plan and provide a lifeline of care for the future.

If you would like to find out more about how you can leave a gift in your Will, please visit juliashouse.org/legacy or speak to our Legacy Fundraiser Amy Martin on 01202 644220, or email legacy@juliashouse.org

Christmas Wishes

For Addy

The twinkling lights of Christmas might have dimmed, but your generosity and kindness continues to shine brightly and we simply couldn’t have a Spring newsletter without recognising the amazing outpouring of support given for our Christmas Appeal, featuring seven-year-old star, Addy.

Hope you have a magical christmas

Sending sparkly wishes for a lovely Christmas to Addy, her family and all the other children and families at Julia’s House

Handwritten Fairy baubles and kind messages flew into our hospices to decorate the Christmas trees – adding some wonder to the children’s visits and cheering up families and staff as they read your heart-felt words.

Addy’s decline from Batten’s disease (often known as childhood dementia) touched all of our hearts

Dear Julia’s House

This is to help Addy and her family to have a good xmas

and the community collectively helped to raise an incredible £66,000. This meant that families like Addy’s could feel safe and supported over Christmas and into the new year – no matter what challenges came their way.

Thank you for your immense kindness and for helping to grant Addy’s Christmas wish!

If you have read Drae’s story as part of this Spring’s ‘Care Every Step’ Appeal then it’s likely his little footprints are imprinted on your heart already.

Born with a rare and serious genetic condition called TBCK syndrome, 15-month-old Drae has been through numerous seizures and hospital visits already in his short life. He’s unable to sit, roll, hold his head up and requires round-the-clock, complex care. Yet, Drae’s Julia’s House Nurse, Amy, describes him as a contented, happy babyquick to smile brightly at his family and at his nurses and carers when they look after him on respite sessions.

Mum, Rachel, who finds herself on a very uneasy road caring for Drae’s needs while looking after her four other children, said,

Drae’s Story

“Having a child with a life-limiting diagnosis is hard on the entire family, so it’s very reassuring to know Julia’s House supports us all and goes above and beyond for the whole family, giving us help and support emotionally and physically.”

The ‘Care Every Step’ Appeal shines a light on the growing demand for our care locally, as more and more babies like Drae are surviving with complex conditions due to medical advances. More families like Drae's are reaching out to Julia’s House and it’s only through the generosity of our local community that we can grow resources and extend a helping hand to every family in need – each step of the way.

There were waggy tails and treats galore at our Wiltshire hospice when some four-legged friends came to visit.

Moose the (very well-behaved) cockapoo was brought in by her owner, who is a volunteer with the national Pets as Therapy charity.

“The children absolutely loved taking it in turns with the brush to groom Moose,” says Play Worker Lisa Magill, who organised the session. “We know that stroking and cuddling soft animals can help to reduce stress and anxiety and boost that happy feeling.”

The miniature Shetland ponies from Little Hooves visited twice – during a care session and again for a special sibling activity day. All the children had the chance to brush and walk the ponies around the hospice car park before they came inside the hospice for some pampering.

“We want all the children we care for to be happy and have fun through play,” says Lisa. “Sometimes it’s not practical for our families to go to a farm or a theatre. It’s really nice and helpful to bring entertainers and activities into the hospice, where it’s accessible, safe and comfortable and there are medical professionals around if they’re needed.”

Pet Power Housemates is flipping fabulous

They say laughter is the best medicine, and we certainly had a belly-full at our recent Housemates events in Poole and Swindon!

Organised by our Family Support team, the regular whole-family mornings are jam-packed with arts and crafts, sensory activities and stories, sign and rhyme sessions, and a tasty pile of homemade cakes, hot toast and tea.

“We wanted to create a feel-good atmosphere, where families could come together and build their network of support with other families who know what they’re going through,” says Family Support Worker, Melissa Farmer.

In February, the Housemates events had a special Valentine’s and Pancake Day theme, complete with taster massages for some of the parents from our Complementary Therapy team. Our Sibling Workers and Play Workers also attended to provide their expert support.

“Our pancake flipping activity was hilarious,” says Melissa. “One of the boys who attended is blind and he wanted to have a turn. On his first go, he flipped the pancake straight through the kitchen hatch, and on his second go he launched it and hit our Chief Executive Martin Edwards! He loved it so much and everyone was laughing. A grand finale to a super session.”

Photographer: Jon Bolton

Photographer: Phil Abraham

Making a Big splash in Dorset

You won’t be able to miss the Julia’s House Great Tail Trail in Spring 2025, as 40 giant mermaid tail sculptures will be creating a wave of excitement across Bournemouth, Christchurch and Poole (BCP), raising vital funds for our service.

The Great Tail Trail is the UK’s first ever mermaid tail sculpture trail and will be running for eight weeks from 5 April – 1 June 2025.

Sponsored by local businesses and decorated by local artists, the colourful sculptures will be on display in a free trail along the coast and in towns and parks. Over 80 local schools and community groups will be invited to take part too, designing their very own Tiny Tails.

The very first mer-mazing mermaid tail has been designed by internationally acclaimed local artist Stuart Semple and was featured at the trail launch at Rockwater in Branksome, painted in the pinkest pink and sparkling with diamond dust!

Find out more about the trail and how to sponsor a tail at greattailtrail.co.uk

Mermaid tails were chosen as they reflect our Mermaid end-of-life suite at the Dorset hospice.

Easter Egg Fun

Eager egg-seekers returned to Wilton House, near Salisbury, for the ‘Easter Bunny and the Lost Eggs Trail’ in support of Julia’s House families.

Children were sent on a whimsical journey to find eggs through budding landscapes, winding past the adventure playground, along the tranquil River Nadder, and through the woodlands and delightful grounds of Wilton House.

Adding to the enchantment of the trail were the captivating characters lovingly brought to life by the talented Wiltshire-based artist and book designer, Chantal Bourgonje. Her beautiful illustrations adorned the path, filling it with wonder, delighting young and old alike.

We were overwhelmed with the support as approximately 650 spirited egg-hunters joined us to achieve an incredible £4,907.51 for seriously ill children and their families.

None of this would have been possible without the generous support of our sponsors, Nucleus, one of the UK’s leading independent pensions and retirement groups based in Salisbury.

Kindly sponsored by

Artist, Stuart Semple, with the first designed mermaid tail

Photographer: Simon Ward

Photographer: Jon Bolton

A Blossoming New Project this summer

If you enjoy a visit to a garden of beauty or you would like to share your own proud planting accomplishments with others, a Julia’s House Open Garden event could be for you!

All funds raised means that the children we care for can continue to enjoy the safe retreat of their hospice gardens too. Our outdoor spaces are lovingly tended to by a team of green-fingered volunteers and are havens for the children to get closer to nature and have fun together.

DORSET: Sunday 2nd June

9am-5pm (time slot bookings)

Carraway Barn, Carraway Lane, Marnhull, Sturminster Newton, Dorset DT10 1NJ

Two charming acres encompassing woodland walks met with white borders of hydrangeas, hostas and ferns. Experience a beautiful established walled garden, where deep borders are planted with roses, peonies, alliums, geraniums and topiary, encircling a water lily pond.

£6 entry. Tea, coffee and cake can be purchased on the day. Limited parking on-site, street parking nearby and children are welcome.

Host your own Open Garden

Are you inspired to open your garden and make a real difference? The Julia’s House team are dedicated to making your event a success. We are here to guide and support you - offering resources and advice on health and safety and making sure you have everything you need.

Register your interest to open your garden in 2024 or 2025 at juliashouse.org/open-gardens or call our Head Office for more information.

WILTSHIRE: Saturday 15th June

10am-5pm (last entry at 4pm)

Tania Compton’s Spilsbury Farm Garden, Tisbury, Salisbury, SP3 6RU

Exquisite six-acre gardens sweeping with a mixture of formality and wildness. Ancient oak trees, an orchard with long meadow grass peppered with perennials and borders billowing with eryngiums, delphiniums and cardoons and roses.

£6 entry. Tea, coffee and cake can be purchased on day. Parking field. Well behaved dogs and children are welcome.

Shops Update

Rags to Bags...

Keen crafter and Broadstone Assistant Shop Manager, Debbie Jeffries, has weaved a fabulous plan and is rallying up supporters and transforming the rags that cannot be sold in the Julia’s House shops into sellable treasures!

The new ‘Rags to Bags’ sewing group is made up of keen and crafty volunteers giving their time and talent to stitch bags-for-life and charming summer buntingmaking use of pre-loved materials that would otherwise be recycled. This not only reduces waste for

In January 2024 Julia’srecycledshopsHouse

17,157kg of textiles

the Julia’s House shops, but aims to generate extra sales to further support Julia’s House families.

New shop

Debbie says, “Sometimes good quality donations such as curtains and drapes have a few minor imperfections like sun fade and this makes them difficult to sell. But instead of them going to waste, I thought we could give them a makeover – taking the unblemished sections to create something that’s much more appealing to customers, and that’s useful too. Rags are getting a whole new purpose and we are having a lot of fun at the same time!”

3,700kg of linens curtains&

3,455kg of shoes, handbags, belts & hats

Where Julia’s House shops are unable to sell or make use of donated items, we use TRUST certified recycling companies who are sustainable and reputable and follow regulatory guidelines - improving and maintaining best industry standards within the recycling sector.

If you are interested in volunteering your time, there’s a place for you in our sewing circle - and no experience is necessary. Meetings are once a month above the Julia’s House shop in Creekmoor’s Neighbourhood Centre, and volunteers are also welcome to sew from home.

Email Debbie.jeffries@juliashouse.org

Regent

Plans for a library section much like Creekmoor’s shop (pictured here)

Regent Street in Swindon is the place to be for an all-new Julia’s House boutique shop opening soon.

Previously the premises of ‘Shoezone’ it will become a central and sustainable place for the local community to access affordable preloved clothing, children’s wear, toys, bric-a-brac and home furnishings. There will also be a special library section full of pre-loved books, ranging from fiction to non-fiction, reference, and children’s books.

In 2023 we sold 94,476 books, raising £115,940 for Julia’s House families

Retail Manager, Tracy Stanley, says, “We are very excited to be opening another shop in the Wiltshire community. All our shop floors are designed and fitted thanks to a talented retail team at Julia’s House, minimising our costs so that more funds go towards the Julia’s House families who need our care. We recycle old shop fittings and use natural reclaimed materials, and bold wallpapers and donated vintage furniture creates a consistent boutique style our customers will recognise from our other shops. Please do pop in for a chat and a bargain! We look forward to welcoming you.”

Opening 2nd May 2024

recruitment for staff and volunteers is already underway and your pre-loved donations are welcome. Visit

Keen sewers: Broadstone shop Assistant Manager, Debbie Jeffries, and volunteer, Louise Greenwood

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