Dear Supporter
Our newsletter is shorter this time, to save money in the current climate – I hope you still like it. Do please read about Hope, a girl we help care for, and thank you if you can support our appeal.
Some people think hope is in short supply in a hospice. But while the outcome may be known, the timing is not, and each day is an opportunity to bring joy to a child or comfort to a family.
Besides their compassion, our nurses and carers have a vital quality in common: a glass-half-full attitude. In every hour of every day, they see the potential to help a child make the most of life. This is our hope.
Thank you
Martin Edwards Chief Executive, Julia’s House
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Dorset address:
Julia’s House, Head Office, Ground Floor, Allenview House, Hanham Road, Wimborne, BH21 1AS.
Wiltshire address: Julia’s House, Bath Rd, Devizes, SN10 2AT.
Thank you to our featured volunteer photographers, Gareth Iwan Jones, Simon Ward and Andrew Plant.
Hope’sstory
Sixteen-year-old Hope was given her name before she was born. She has an older brother called Sam, who sadly died just 16 hours after he was born on Christmas Day. Mum Caroline says that when her daughter, Hope, came along soon after, she was very much wanted and needed...
Hope was born with a rare and life-limiting mitochondrial disease called pyruvate dehydrogenase complex deficiency. It affects Hope’s ability to process carbohydrates or make the energy her body needs to work properly. It means Hope is unlikely to ever talk or walk by herself, and she is registered blind. The hospital consultant said it was the unlucky lottery of life – to have two children with two completely unrelated, rare conditions.
A very poorly baby
She was our ‘hope’ after Sam. Her name has taken on another meaning now, of course, but she is the ultimate in hope, and very much lives up to her name.
Hope’s mum, Caroline
A ‘miracle’ diet
Hope was a lovely baby, but she was a very poorly baby. She was only 4lb when she was born, so she was small, but she seemed fine at first. We had a few weeks at the start when we were blissfully unaware really. Hope started to smile at five weeks – and she really has always had the best smile. Then at around three months old, her body started jerking oddly. I quickly realised that these jerks were seizures, and Hope was having around 200 of these a day. It was really awful.
She was given epilepsy medication, which did help, but it made her sleep all the time. She seemed to regress at that point in her development, and her sight seemed to go then too.
When Hope began to eat solid foods fully, that’s when she got very seriously poorly. For the next few years, we were known to be frequent flyers to the hospital. She’d have really big seizures and terrible chest infections. I used to think her little body can’t carry on like this.
Once we got Hope’s diagnosis a lot of pieces fell into place. We started her on a low-carb, high-fat ‘ketogenic’ diet, and it was like a light came on. Suddenly, she was reaching for a mobile in her cot that she’d not paid any attention to before. She started rolling again and sitting up. And she just really had another lease of life. It isn’t easy – her special diet means we prepare everything fresh and by the gram – but it’s absolutely worth it. The change in Hope has felt like a miracle.
She can’t drink as much as she needs because of reflux, so every 45 minutes during the day we have to give her water via a tube into her tummy. Hope also wakes several times a night because she has sleep apnea, which means she often stops breathing. Hope is dependent on us for everything.
The reality is that Hope has this horrible life-limiting condition and there is no cure. She’s stable now but Hope’s future is unknown, and things could change overnight.
Hope with her older siblings, Jordan and Max
Hope with mum Caroline
Giving Hope her voice
We’re all working really hard to give Hope the voice that she has inside her head and give her the freedom to communicate. She’s just started using a walker and although she can’t talk, she can communicate really well.
You’ll never meet anyone that loves stories as much as Hope! She likes to read her favourites over and over again and would read stories (and we largely do) from the moment she gets up to the moment she goes to bed.
When the Julia’s House nurses and carers come to our home, they help by giving Hope tea and a bath and take turns to read her stories before putting her to bed.
And then it’s my time to go for a run, to meet up with friends, relax and recharge. Or it means my husband Chris and I can go for a nice dinner, which is something we can never do together because we are always tag-teaming, even when we go on holidays.
There for the whole family
When Hope had her first overnight hospice session at the Julia’s House hospice it was really significant, as it was mine and Chris’ second night together ever away from Hope in her whole life. It was our wedding anniversary and we were able to celebrate with a special spa and hotel break and it was such a treat.
It’s always a huge weight off for me – to hand over all Hope’s medications, her blood ketone testing machine, her feeding kit, and her lunchbox, to someone else who is specially trained and will give her the very best care for the next five or six hours. That’s the only time I can ever do that, and it’s such a lovely feeling.
Without Julia’s House, I don’t know how we would have coped this past year. I’d be more overwhelmed and stressed and tired, and that would have an impact on our whole family.
When you have a child with a life-limiting condition, you’re not thinking too far ahead. Nothing is guaranteed. You live in the moment; you’re making the most of the now. Julia’s House helps us all to make the most of the now, with Hope. Their regular care and support has been a wonderful gift to our family.
£25
could buy a sensory toy to help a child’s play and development, or storybooks for bedtime reading.
£65
could give overwhelmed parents the support they need when applying for equipment they are entitled to.
could help towards respite care that enables the rest of the family to have a much-needed break.
Hope with Nurse Molly
The Great Tail Trail is Live!
We’re making a big splash across Bournemouth, Christchurch and Poole with The Great Tail Trail.
We’d love you to explore the trail from 5 April to 1 June - it’s a free and fin-tastic way to enjoy amazing art, fresh air and exercise with family or friends, while you search for our colourful mermaid tail sculptures around town and along the beautiful coastline.
The mer-mazing sculptures you’ll encounter outdoors are GIANT - each one sponsored by a local business and individually designed by talented artists. You’ll also find our Tiny Tails, designed and painted by local schools and groups, in indoor locations, such as libraries, leisure centres and some of our Julia’s House shops!
Our shops will also sell merchandise, including mugs, tote bags and paint your own tails, for you to take home as a reminder of your trail experience.
Get ‘appy
Download The Great Tail Trail app for just £1.99, which you’ll find in the Apple Store or on Google Play. The app will help you plan your trail route and tell you everything you need to know about the sculptures, sponsors and artists.
Thank you for your gift of care for Isla! Scan here to download app
Isla’s Christmas Appeal touched all of our hearts and we cannot thank you enough for your generous ‘Gifts of Care’ which helped to raise an incredible £63,000 for families like hers. Your kindness and heartfelt messages meant that Julia’s House families felt safe and supported all season, which really made Isla’s Christmas and New Year wishes come true! Thank you.
Dates for your diary
On 14-15 June you can see all the sculptures together for the very last time at our Farewell Weekend at the Bournemouth International Centre. With nearly 90 sculptures under one roof, it’s going to be quite a spectacle! There will also be live entertainment, fun and games for all the family to enjoy.
And on Friday 20 June you’ll have the chance to buy your favourite mermaid tail at our Grand Auction at The Italian Villa, Compton Acres. Wherever you choose to place your sculpture, it’s sure to be a BIG talking point and a lasting memory of this very special community art event. All funds raised at the auction will go towards the care of children and families supported by Julia’s House.
Tail us about it
We hope you’ll enjoy tracking down all the mermaid tails over the next few weeks. We’d love to know your favourites and see your selfies with the sculptures, so don’t forget to tag us on Facebook and Instagram @greattailtrail
Welcome to the Julia’s House Preschool
Good morning, Wilf! Hello, Isla! Good morning, Sully! Come on in...”
It’s 9.50am on a Thursday at the Devizes hospice and the driveway is full. There’s a buzz of lively chatter and a warm welcome, as parents bring in their young children for six hours of play, learning and care.
The morning ‘drop-off’ is a scene many parents and grandparents will be familiar with. But this isn’t your average pre-school. Instead of packed lunches to hand over, there are oxygen canisters, feeding kits and suction machines. Instead of spare wellies, there are wheelchairs and heart monitors.
Before families arrive, the team of Nurses and Carers run through every child’s specific needs for the day.
“Every child we care for has a complex condition,” says Nurse Jemma, “and we need to be prepared in case of a medical episode.”
Before leaving, each parent has time with their Julia’s House Nurse, to let them know how their child has been recently. There is a form, so everything is recorded and nothing is missed, but it’s a friendly and familiar conversation, and a chance for parents to let off some steam, ask for advice, or share some news.
Abbie, mum of four-year-old Wilf, says, “I love the mid-week sessions at Julia’s House! It’s a day in the week when I can get some jobs done or spend time with Wilf’s healthy twin brother, Rupert. And Wilf loves all the 1:1 attention and care that he gets from his Nurses and Carers.”
Felix with Play Worker Lisa and Carer Alyson
Millie with
While most children attending these regular sessions are under five years old, they’re not exclusively for preschool aged children.
“Older children, like 16-year-old Hope, also really love this time for storytelling, sensory play, bubble baths and singing,” says Jemma. “It’s lovely to see how the children interact and make friends too.”
Crucially, the regular midweek sessions give parents six hours of respite care that they can look forward to.
Abbie says, “It’s good for your mental health to get those breaks. As much as I love being Wilf’s mum, it’s so nice to be able to take a break from being a fulltime carer, just re-set a bit, and feel like yourself again.”
Lead Nurse Lisa would like more families to know they can come and meet the team at Julia’s House before their baby is even born,
if they know their child has a complex medical condition. She thinks this would help to take away the myth of what a children’s hospice may look like and can offer.
Lisa regularly links up with local neonatal units too, to raise the profile of Julia’s House and the services that a children’s hospice can provide.
“More children are surviving and living for longer with complex medical needs because technology and medications have progressed so much,” says Lisa. “A baby born at 24 weeks today has much higher survival chances than just a few years ago.“
“It can be a very isolating and worrying experience when your baby has a complex medical condition. They might be going to baby groups, and there’s nobody for them to connect with because no one else is walking that same path. It’s also a time when they may be grieving their ‘well baby’ that was never born.”
Lisa says, “If they were referred to Julia’s House, they could have a vital support network around them. They would be introduced to other parents who know what they’re going through, they would have access to a Family Support Worker, sibling support, complementary therapy, counselling and more, as well as nursing support for their unwell baby.”
She adds, “We want parents to know that choice is there for them. We want families to know we’re here, and we can help.”
Sully with Nurse Molly and Carer Gemma
Wilf with Nurse Amy
Drae with Carer Stephanie
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