Julia's House Newsletter: Autumn/Winter 2021

NEWSLETTER AUTUMN/WINTER 2021

IN SAFE HANDS How your support shapes their future

INSIDE THIS ISSUE: 4 Isla-Rae’s story

In safe hands

6 Will you?

Leave a legacy of care with our online free Wills service

9 Julia’s House arrives in Chippenham

Growing support for our care

10 Together we care

Our Wiltshire appeal launches

12 Getting together again Hospice sessions and fundraising events are back!

13 Ten minutes, ten questions

Meet Julia’s House Volunteer, Dave

14 Child’s Play

Playworker Lisa gives us an insight into her role

15 Kick-starting their future

Supporting young jobseekers in our shops

OUR POSTAGE IS FREE! If you have received this newsletter by post, you’ll be pleased to know it hasn’t cost us a penny to send. Barclays generously cover the postage costs for all our mail.

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As the children are finally able to mix again at the hospice, and group support events for their parents re-start, let’s look back for a moment.

Thanks to you, we helped children and families through the longest, loneliest periods of isolation in their lives.

For much of this time, public sector outreach services halted, so our nurses and carers were often the only ones supporting the families at home.

As well as providing care, we delivered medicines, children’s activity sets and family goody bags.

Our siblings workers did ‘walk and talk’ befriending visits for the brothers and sisters.

This was all done wearing full PPE, even during heatwaves. Special thanks to our volunteer drivers for kindly collecting our PPE supplies regularly from Plymouth.

We developed online support, for example hosting younger children in playtime sessions, or linking up older children in computer gaming sessions.

Our Patrons recorded entertainment for the children, such as Martin Clunes reading bedtime stories, and James McVey’s special versions of songs by his band The Vamps.

We also offered daily support to the NHS as emergency capacity if local hospitals became overwhelmed.

All this was done while public fundraising was impossible and our shops were closed.

So before we rush on to the next stage of pandemic recovery, can I just thank you for enabling all this to happen, and for standing by Julia’s House throughout this time.

We are incredibly grateful.

Martin Edwards Chief Executive, Julia’s House

STAY IN TOUCH...

Call us 01202 644220 Email us info@juliashouse.org Visit us www.juliashouse.org Follow us

Registered Charity No. 1067125

Dorset address Julia’s House, Barclays House, 1 Wimborne Road,

Poole, Dorset BH15 2BB Wiltshire address Julia’s House, Browfort, Bath Road, Devizes SN10 2AT

CARE UPDATE

LOOKING TO THE FUTURE FOR FAMILIES

Taken pre-COVID

Director of Care, Claire Hudson-Cooper, looks at how our response to COVID is positively shaping our future service

GREATER FLEXIBILITY As referrals increase, we want to continue to provide the majority of our care in families’ homes and in the community but also use our hospices more. Opening times can be an obstacle for some families, so we’re going to be more flexible. For instance, being open for after school care should families need it.

INCREASINGLY COMPLEX NEEDS The children we care for have increasingly complex needs, so we are expanding our expert medical team to help every child get the best from their lives. We want to be able to provide even more responsive care as children become unstable and reach the end

of their life. This will be alongside the holistic care that Julia’s House provides families throughout their child’s life, through bereavement and beyond. For families, this means we can provide a choice in location of end of life care, as well as being able to support more children and young people and their families when the worst happens.

FAMILY SUPPORT SERVICES Our respite and clinical care for families is a real lifeline. But we want to be able to support them in other ways. We are increasing our team of family support workers who can go out and visit families at home, helping to signpost them to other support services, fill in paperwork or even go with them on a hospital visit.

SUPER SIBLINGS During COVID we made one-toone visits to siblings and they loved it! Picking them up after school or just taking them to the park for some me-time and a chat can help with stress and anxiety. The families really want this to continue alongside all the fun events and outings that we did before the pandemic, so we’re going to need more sibling workers and are busy recruiting right now.

A FULLY ROUNDED SERVICE The families have told us they want the services we put in place during COVID to continue, on top of what they had before. So, it’s really exciting to be able to say yes!

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AUTUMN/WINTER 2021

IN SAFE HANDS

Like two pearls in a shell, Isla-Rae and her twin sister Esmae were so tiny when they were born, that Mum Lucy remembers cradling their head and body in just one of her hands. Now, two and a half years later the family are taking each day as it comes with Julia’s House by their side.

When I went for my 27 week scan, I could feel that something wasn’t right. After a minute scanning me the consultant said, ‘We need to get these babies out right now.’ I barely had time to ring their dad, Nik, before they wheeled me into surgery. Within an hour, the girls were here.

When they were born, neither of the girls were breathing and they needed to be resuscitated. They were tiny – Isla weighed just 700 grams and Esmae was 900 grams.

After a week of the girls being born, they told us that Isla had severe brain damage. They didn’t think she was going to make it. I couldn’t stop crying. That night they let me hold her for the first time because they really thought it would be the last chance. So I sat there and held her for hours – I didn’t want to let her go.

Both of my parents passed away 4

when I was young, and I always wear a locket with their pictures in. I put the locket in the incubator with Isla and she really turned a corner. It was like they were looking down on her.

I don’t know how I would have got through if I’d lost Isla, and it made me think about how much support we would have had from my Mum and Dad if they’d still been here.

Just as Isla was improving, we got the news that Esmae had brain damage as well. They said she wouldn’t be as severely disabled as Isla, but she would never be able to talk, crawl or eat normally. Actually, that’s not the case – Esmae shouts all the time now and she’s just started to roll over and eat solid foods.

TAKING EVERY DAY AS IT COMES It took a while for us to get our head around having two children with

cerebral palsy and what life was going to be like. We were especially worried about our four-year-old daughter Alarna and how she might be affected. But Nik and I try to just take each day as it comes now.

For the first few months the twins were doing really well. Then, just before their first birthday, Isla’s lungs collapsed – she had a cold, pneumonia and flu all in one go. We nearly lost her. And for the next six months after that, she spent pretty much the whole time in hospital.

They started talking to us then about our wishes for her end of life care because there’s only so much her body can take.

Since then, Isla’s needed to have oxygen at home. She has developed dystonia as well, which makes her muscles go really tense. She arches her back and twists her arms. There’s a lot of medication that we need to

Isla with dad, Nik

give her now, and I’m still feeding her every three hours through her tube – day and night.

“What’s amazing about Julia’s House is they take care of siblings too, so Alarna has a Sibling Worker just for her, who understands how she’s feeling and is there to listen and spend time with her”

ISLA-RAE’S STORY

FINDING JULIA’S HOUSE With all of Isla’s additional needs, we needed more support because it was too much for me to cope with on my own. I felt a connection with Julia’s House straight away – the nurses and carers, the families, the whole feel of the charity – it was really lovely and just right for us. I love that Julia’s House comes out to the family home for community sits.

For me, that’s so much easier. With everything that Isla needs, I end up packing up the whole house every time I go out.

I get anxious about leaving Isla, but when the Julia’s House nurses and carers come I know she’s in safe hands and I can relax. I’m up all night, every night with Isla, and I end up feeling quite down because I’m so exhausted.

So for me, having that time to take a break and lie down, or do something fun with Alarna – it’s life changing.

I can’t go out very easily with the twins and I don’t see many people because I worry so much about them getting poorly. A simple cold could put Isla in hospital again.

So for me, it’s also nice just to sit and chat to Nurse Jess and the carers. They understand what life is like with a disabled child and they have that experience to offer me advice and reassurance.

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AUTUMN/WINTER 2021

THEY DID. WILL YOU? Making a Will is something that so many of us don’t get around to doing – a recent study showed that 60 per cent of adults in the UK do not have a Will* “Lots of people assume that your money will go to your immediate family when you die, but this is not always the case. Making a Will made sense to us, and even a small percentage left to a charity in a Will can benefit so many people”.

A consideration for Richard and Karin, who made their Will using our Free Wills Service and decided to leave a legacy to Julia’s House.

With the new Julia’s House online Free Wills Service you can write your Will from the comfort of your own home. Guardian Angel is a Will provider chosen by us to help write

Julia’s House supporters, Richard and Karin Meek

or update your Will online for free.

Completely secure and with step-bystep instructions, it takes around 15– 30 minutes and when you are happy that your wishes are documented accurately, your free Will is ready to download and have witnessed.

It’s so simple.

Of course, there’s no obligation to leave a gift to Julia’s House in your Will, but we do hope you may consider it once you have taken care of your loved ones. A gift in your Will of just 1 per cent can make 100 per cent difference to parents in need of a vital lifeline.

Contact Amy Martin for more information at amy.martin@juliashouse.org or call 01202 644220 or visit juliashouse.org/legacy

OUR BUSIEST SIX MONTHS EVER The first six months of 2021 were the busiest ever for our community respite care:

111 1,530 4,519

seriously ill children and their families supported with hands-on respite care

care sessions held in family homes and at our hospices

hours of care received by local vulnerable children and families

Two members of our care team were at the majority of these sessions. Community respite is just one part of the holistic, tailored care packages we provide which ensure the children and families we support can fulfil their potential.

*The Co-operative Funeral Care and Co-operative Legal Services

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GIVE TODAY £20 could provide two days’ supply of aprons, gloves and sanitiser to keep our nurses caring and our families safe

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JOIN OUR LOTTERY Be in with a chance to win 23 cash prizes every week Play your part in their care Your details Title

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Julia’s House promotes responsible gambling. Players must be 16 or over and a Great Britain resident. For lottery terms and conditions go to: juliashouse.org/lottery.

In 2020, 64% of lottery proceeds- £431,080 – went back to the charity to provide vital care, 12% was spent on prize money and 24% on expenses such as administration and marketing the lottery.

You have a 1 in 521 chance of winning one of our weekly prizes (correct as of 13/01/2021).

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Julia’s House, Barclays House, 1 Wimborne Road, Poole, Dorset BH15 2BB. Registered with The Gambling Commission under the Gambling Act 2005 (gamblingcommission.gov.uk) Registration No. 000-039939-N-319913-009. Charity No. 1067125. Access support from: GambleAware begambleaware.org.

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LATEST NEWS

JULIA’S HOUSE ARRIVES IN CHIPPENHAM The latest Julia’s House shop opened its doors in Chippenham on Thursday 5th August In a prime position on the High Street just by Costa Coffee, the new shop is all on one floor and full to bursting with great clothing, books, toys, homeware, plus our Christmas stock of cards, diaries and calendars.

Shop manager Donna Harrop says the town has given Julia’s House a warm welcome: “We’ve received amazing donations already and we’ve only been open a few weeks. It’s been very busy and we’ve had some lovely comments from our new customers. We’re just so pleased to be here. We’d love some more volunteers to help at the shop, so anyone interested please just pop in for a chat.”

Helping to fit out the shop was Cam Cole, one of the Kickstart employees, using fittings from donations as well as reclaimed and recycled wood and other materials.

There’s a warm welcome for everyone who visits, so do drop by next time you’re in town!

BUCKHAM DOWN SUNFLOWER SALE A word from our patron, Martin Clunes, on a special fundraising project he’s nurturing for Julia’s House on the site of Buckham Fair “The last two years have been so weird and difficult for everyone and every charity I know is struggling with so many of their usual fundraising activities limited or destroyed. It’s hard to imagine now the giant that Buckham Fair became - sixteen thousand people at the last one, along with their dogs and ponies. The fields are still up there with their beautiful views across Beaminster and out to sea.

“This year I have planted six acres of giant sunflowers and I’m going to sell them to raise some money for Julia’s House. We’ve never done anything like this before and now have a tense wait to see how the crop will grow.

“If you would like to help me help Julia’s House you could buy one for £5 or three for £10, and enjoying them in your home. You can stick them in your garden or on your window sill and the birds will go nuts for the seeds (do you see what I did there?)”

See juliashouse.org for details of how to buy.

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AUTUMN/WINTER 2021

Ted, aged 12

“IT’S EXHAUSTING CARING 24/7 FOR A CHILD WHO IS INCREDIBLY DISABLED, SO WHEN THE NURSES AND CARERS COME IN AND TAKE OVER FOR A FEW HOURS IT LITERALLY LIGHTENS EVERYBODY’S DAY UP” Zoe, mum to Ted

TOGETHER WE CARE It’s only thanks to the wonderful generosity of the local community, businesses and individuals like you that we can be there for the growing number of children and families that depend on our care.

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TOGETHER WE CARE APPEAL

GROWING AWARENESS IN WILTSHIRE Over the coming months, we’re running our Together We Care Appeal in Wiltshire in a bid to raise greater awareness of our care in the county. We hope to bring more of the Wiltshire community together to raise the essential funds needed to provide a lifeline of care for local families. And we’d love to have your continued support in sharing our vital work with others.

The number of children with life-limiting conditions has tripled in England in the past two decades.

And it’s anticipated that the demand for care will continue to grow, as scientific and medical advances mean that more children with increasingly complex needs are living for longer.

However, we’re currently raising £1m less in Wiltshire than we need to run our hospice and our critical service throughout the county each year.

We want to be there for every local seriously ill child and family that needs us. But we can only do this by raising awareness and caring together.

Find out more and get involved at juliashouse.org/together-we-care

OUR LIFELINE OF CARE For the families that we care for, every goodbye or kiss goodnight could be the last. With your support, our nurses and carers give families the chance to make the most of their time together and help them through moments of despair.

Each hour of clinical, emotional and practical care we provide helps families to feel less isolated and exhausted, and relieves the pressure of providing round-the-clock care for a child with hugely complex needs.

And when a child passes away, our nurses and carers continue to be there side-by-side with families to help them navigate the grief and trauma of the unthinkable in the days, months and years that follow.

Thank you for helping us to always be there when we’re needed.

2013

JULIA’S HOUSE LAUNCHES IN WILTSHIRE

2016

A small home-based care service was launched for families in South Wiltshire.

Demand for respite care was much higher than anticipated, including a significant number of oncology referrals from Salisbury District Hospital. Our Director of Care, Claire HudsonCooper, was one of the original nurses in this pilot.

Our Wiltshire care team expanded to reach families throughout the whole county.

Today, families receive 200 hours of respite care per year, completely free of charge.

EXPANDING OUR COMMUNITY CARE

2017

JULIA’S HOUSE OPENS FIRST CHILDREN’S HOSPICE IN WILTSHIRE

More than 1,000 nurse and carer sessions were provided in the county during this year.

With generous support from the community, we opened the only children’s hospice building in Wiltshire. Here, children and their families can receive care, play and thrive in a safe, welcoming environment.

2020

2021

2018

LANDMARK CARE MILESTONE PASSED

CHANGES TO CARE IN LOCKDOWN

Working on the frontline alongside the NHS, Julia’s House helped vulnerable children stay safe and well at home, relieving the pressure on local health services. Our care was 100% community based and we continued to support families throughout the pandemic, when other services stopped.

AND THE FUTURE

The first six months of 2021 were the busiest ever for community respite in Wiltshire.

We’re now welcoming children and siblings back to our hospice, and we’re planning more flexible opening hours to make it even easier for them to come. We’re also expanding our care team in response to the growing needs of local families.

“IT TOOK ME A LONG TIME TO TRUST ANYONE, BUT I TRUST OUR JULIA’S HOUSE NURSES 100% WITH JOHNATHON, AND I DON’T KNOW WHAT WE’D DO WITHOUT THEM” Johnathon, aged 12

Leanne, mum to Johnathon

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AUTUMN/WINTER 2021

GETTING TOGETHER AGAIN The easing of lockdown restrictions has meant some small but very welcome changes for our families, staff and volunteers

After what feels like forever we’ve re-introduced some hospice sessions, and it’s put a big smile on everyone’s face! The beautiful weather means children have been able to spend time exploring the sensory garden and outdoor play space. It’s lovely to hear their laughter and see how much they are enjoying being back.

Looking ahead, we hope to be able to reinstate group family support events in the autumn, depending on government guidelines.

Our fundraising teams have also enjoyed the benefits of being able

heartfelt thanks to all the intrepid skydivers who raised money for Julia’s House families – you’re all heroes!

After having to cancel our large scale fundraising events last year due to the pandemic, we are now full steam ahead with our 2021 events. We can’t wait to give you a big, warm welcome whether you plan to hike, cycle, run or host a get-together. However you choose to support us, we’ll be with you every step of the way, providing tips and advice and supporting you to stay safe while you fundraise.

See our events and sign up online at juliashouse.org/events to get out and about a little more.

We held a charity clay pigeon shoot and silent auction at Ranston Farm in Dorset, which was tremendously successful and allowed us to raise enough money to fund Nurse Molly for up to two years!

The Big Jump was also able to go ahead, and we want to send our

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VOLUNTEER Q&A

TEN MINUTES, TEN QUESTIONS Meet Julia’s House Volunteer Dave HAVE YOU VOLUNTEERED BEFORE? I am a new volunteer, so this is my first role and it’s one I chose out of many options.

HOW DID YOU LEARN ABOUT JULIA’S HOUSE? I already knew about Julia’s House as an organisation, having worked as a member of the Care team so my decision to volunteer was a simple one. I know every minute I volunteer contributes towards a minute of joy, respite or care for a family or child somewhere across Dorset and Wiltshire.

WHAT DID YOU DO BEFORE? I worked for 30 years as a Community Mental Health Nurse.

After three years of retirement I joined the Care team at Julia’s House.

The work was inspiring, from the nurses and carers to the children and families.

WHY DID YOU VOLUNTEER? Like most people in the country, I spent much of 2020 and early 2021 in lockdown. Lockdown, for all its negatives, provided time to stop, think and reflect. I realised I now have time to spare and how best I should use it.

WHAT’S YOUR ROLE? I volunteer two mornings a week, working at our store in Creekmoor.

WHAT’S THE BEST THING ABOUT YOUR ROLE? Where to start? I am working alongside other volunteers, Julia’s House staff and the general public.

Every shift is different, my colleagues are friendly, the store is run by a dedicated and caring team and the organisation is the best, in my opinion, for supporting and training its staff and volunteers.

And as for the public I meet – they’re wonderful, caring, funny and generous!

ANY PARTICULAR SPECIAL MEMORIES OR FUNNY MOMENTS? I have so many special memories from my role in the Care team – too many to list here – the privilege of working in the homes of the families we support, the fun of working a hospice day and even witnessing the intensity, emotion

and professionalism of our end of life care.

When it comes to volunteering, my clothes folding skills have certainly raised a few smiles!

WHAT DO YOU ENJOY THE MOST? Meeting people, sharing a laugh with them, seeing the generosity and knowing that every penny, pound and item donated delivers professional, skilled and caring support to children and families across Dorset and Wiltshire.

HOW HAVE YOU GAINED PERSONALLY FROM YOUR VOLUNTEERING? I am meeting new colleagues, making new friendships, learning new skills and my spare time now has purpose and is well-spent.

WHAT WOULD YOU SAY TO ANYONE THINKING ABOUT VOLUNTEERING FOR JULIA’S HOUSE? I would say, have a look, find out.

There are many roles and you’ll be well supported.

EQUALITY, DIVERSITY AND INCLUSION Everything we do in the provision of care at Julia’s House is about treating people equally as individuals, and seeing their potential rather than their limitations. We aim to be fair and kind to our people and to recruit representatively from the local community, playing our part in correcting disadvantage, giving everyone equal opportunity, and ensuring diversity of background, experience and opinion in the charity.

We are committed to challenging our own thinking in how we recruit, addressing barriers to inclusion, being sensitive to differences between people at work and always actively seeking improvement.

Find out more at juliashouse.org/equality-and-diversity

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AUTUMN/WINTER 2021

CHILD’S PLAY

Playworker Lisa gives us an insight into her varied and rewarding role

Lisa (on screen) carries out a virtual play session with Alexander

Like everyone, my role has been very different over the past year. Stacey (my fellow Playworker) and I have been providing virtual play support.

Normally we would be travelling across Dorset or Wiltshire delivering play within the family home, in the community or at the hospice.

Play is at the very centre of a child’s development. It allows them to practice cognitive, emotional and motor abilities. But when a child has a disability or long term illness the development process of play is greatly interrupted.

Play offers fun, laughter, anticipation, repetition, predictability and of course, the wonderful feeling of being in control and of making something happen. We all know that once you succeed at something, you want to repeat it to get that lovely glowing feeling back again and again!

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All our one-to-one play sessions are individually pitched. We would never go to a session thinking “this is what I need for a child with cerebral palsy and epilepsy.” It would be “I am going to visit Harry, who is functioning at the age of three, loves Thomas the Tank Engine, and just happens to have …”

We provide specific support for behaviour management, sensory exploration, intensive interaction, support for medical interventions and food play. Play is so important for our families as their lives can be taken over by their child’s medical needs.

We focus on what each child can do and not what they can’t, making sure we give them time to process and respond. This can mean waiting for a period of 30/45 seconds for a child to respond in a variety of ways, such as making a vocalisation or

moving a finger or a foot. We aim to give them control of their play as there is so much else happening in their lives that they can’t control.

All play support has been provided virtually during COVID - story times, activity sessions that explore all of the senses, music therapy and gaming.

We have just recently started doing a few face-to-face sessions at the hospice again.

Because we aim to pitch play to every child’s individual needs, abilities and preferences we take time to plan and prepare for all sessions. We need to always have a plan B and C to hand, especially at the moment whilst we are supporting the children and the team through a screen. It is vital to offer the child choices, and our aim is to ensure those choices always bring about a feeling of joy.

Every child has the right to play!

KICKSTART SCHEME

KICK-STARTING THEIR FUTURE Julia’s House has been very happy to help 30 young jobseekers into work through the Government Kickstart employment scheme – a scheme which helps those at risk of long term unemployment gain valuable skills in the workplace These young people, aged 16–24, are determined not to let the effects of COVID lockdown hold them back. They have been undergoing their six-month trainee placements in the Julia’s House charity shops, and their help has been invaluable to our retail team.

“We’ve been blown away with the dedication and passion that our Kickstarters have shown since joining us in the spring,” says Tracy Stanley, Julia’s House Retail Manager. “They’ve been wonderful with our customers and a real asset behind the scenes in our shops, warehouse and retail office. We feel very lucky to have them on the team.

“It has been a real pleasure to give something back to the community and give these young people the opportunity to gain valuable skills and experience that will help them in the future.”

And while the charity saves on employment costs – with their salaries being paid by the Government – it means more of our shop income can go towards our care. So it’s a win-win situation! We wish all of our Kickstarters the very best with their future careers!

Since Kickstarter, Jodie Symes, from Hamworthy was made redundant in 2019, the 24-year-old has struggled to find a job to fit around her life as a single mum to her young daughter: “Being a new mum, I found it hard to find something that was flexible around nursery hours and also suited the skills I had learnt from my previous jobs,” Jodie says. “I have been a different person since returning to work and have enjoyed every moment so far at Julia’s House. I love working with people who are proud of the job they do, and I have learnt so much already.

“I can finally have the work-life balance I have missed out on, and this is all down to the amazing and understanding team. I hope to further my career with Julia’s House as it’s such a happy place to work with great people.”

Kickstarter, Peter Llewhellyn, was forced to isolate during the peak of the pandemic because of medication he takes for a health condition. For the 24-year-old, getting back to work has been a real boost: “I basically haven’t been able to work for over a year because of the Covid outbreak,” says Peter. “Once things started opening up again earlier this year, I began to look for a role that would fit my skills and experience but I found it really difficult.

“When my work coach told me about the Kickstart scheme, I jumped at the opportunity as soon as I could” he says. “I’ve really enjoyed working at the Julia’s House Salisbury shop.

I find the work rewarding and it has helped with my anxiety. It’s been a huge relief to have consistent hours and it’s been great to get back into work again.”

Julia’s House is hopeful that we can give the same opportunity to more young people this Autumn. For more information contact retail@juliashouse.org or call 01202 601998 15

SUPER SIBLINGS We want to celebrate our super siblings. We’ve not been able to run our usual sibling activities and events this summer but it hasn’t stopped the fun. One devoted big brother has even been space walking around the moon!

HARRY’S CHALLENGE IS OUT OF THIS WORLD Super stellar Harry has been on a ‘Race around the moon’ to show how much he loves his little brother Reuben. The seven-year-old is inspiring others to join him on his 6786mile challenge to raise money for Julia’s House. His family are hugely thankful for the care they get for two-year-old Reuben, who was born with a rare condition that causes his brain to deteriorate. Mum Sophie says, “We’re beyond proud of Harry. He has such a special bond with Reuben.

I think that’s what’s going to break our hearts the most when Reuben does pass away because they love each other so much.”

LOOK AT THE FUN OUR SUPER SIBLINGS HAVE BEEN HAVING WITH SIBLING WORKERS, MARIA AND TRACEY. SO MANY SMILES!

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