Ziggy with Carer Kelly (photo by Jon Bolton)
In the news...
Martin’s 20/20 Challenge
When our young ambassador Diana Lawrence heard that CEO Martin Edwards was coming up to his 20th anniversary with Julia’s House, she had an idea: that he invite 20 people to each do a different challenge with him.
The aim is to raise £100,000. Martin has already completed a 33-mile run, a 70-mile walk between our two hospices, an army-style fitness test, a sky dive, a tractor pull, an abseil down
Extension at our Dorset hospice
Spinnaker Tower in Portsmouth and a triathlon with Vikki Slade MP across her constituency.
Next up - a tattoo with Julia’s House patron, James McVey, and a 55km ultra run in the Lake District.
The final challenge, 20 sea dips, is in chilly December. Good luck Martin!
Check on Martin’s progress and have the chance to win one of James McVey’s guitars in a special prize draw in aid of Julia’s House: juliashouse.org/2020
A huge congratulations to 11-year-old Carmela, who earlier this year became the youngest ever recipient of an MBE!
Carmela, who is supported by Julia’s House, has LMNA congenital muscular dystrophy – a rare, progressive condition that affects her muscles, heart and lungs.
Over the past few years, she’s raised more than £400,000 for Julia’s House
Our Dorset hospice is undergoing a small extension to provide additional space and facilities to meet the growing need for our care in the county. We’ll be extending our Mermaid Suite where we support children at the end of their life, so it’s more comfortable for families to stay and spend time together. We’ll also be installing new equipment that helps us care for the young people
and Muscular Dystrophy UK through various activities, including a 100-mile trek along the Jurassic Coast. She also leads online exercise sessions for others with disabilities.
Carmela says, “I never thought anything like this would happen. I just want to make a difference to the disability community, to show them: You’re strong, you can do whatever you want.”
we support, such as larger bathroom facilities and easier access between the bathroom and bedroom so older children have greater privacy, space and independence.
The extension will be funded through the additional Government capital funding for investment in hospice facilities, plus funding from trusts and foundations that support capital projects.
Find out how you can be part of Sustainable
Tails raise fin-tastic funds
More than 18 months ago we began work on our biggest fundraising project to date - The Great Tail Trail.
Our mermaid tail art adventure was a huge undertaking, involving more than 40 professional artists, 45 local business sponsors and 43 schools and community groups. The trail took place across Bournemouth, Christchurch and Poole between April and June, with 88 striking and colourful sculptures positioned along the coastline and in the towns.
Thank you to everyone who has supported The Great Tail Trail – we couldn’t have done it without you. More than 5,172 of you downloaded The Great Tail Trail app, collecting 137,819 tails between you as you covered a staggering 16,118 miles in total.
When the Waves Come by LUCANART was the most collected sculpture and The Mermaid’s Tale, a beautiful Tiffany-glass style mermaid by Glen Brooks of Studio Glen, was the most popular.
The trail’s Farewell Weekend, held on 14th and 15th June, saw over 2,000 visitors come through the doors of the Bournemouth
Our Grand Auction on 20th June saw all the sculptures go under the hammer, raising more than £200,000 for Julia’s House - a simply mer-mazing result!
International Centre, raising an estimated £8,000 and offering one final chance to view the tails up close.
The auction, which was kindly sponsored by specialist engineering company, IMI Poole, was led by professional auctioneer Charlie Ross, presenter of BBC TV’s Bargain Hunt. Charlie created an electric atmosphere as the bidders battled it out for their favourite designs!
The evening’s top-selling tails were Oceana, designed by Gill Prendergast, and Growing Together, the AFC Bournemouth mermaid tail designed by AUB student, I’Eisha Haywood, which raised an impressive £10,500 and £17,500 respectively. Julia’s House young ambassador, Ebony Robinson, also joined the bidders and took home Moomaid, the cow-patch mermaid tail designed by Isobel Letham.
We are pleased to say that every single tail has now found its forever home!
The community support that the trail has generated is critical to the future of Julia’s House, ensuring we can continue to care for the children and families that rely on us.
Manta Ray Mermaids
Julia’s House patron, Martin Clunes
Countdown to Christmas...
Come a-caroling with us!
They’re so popular we’ve doubled our Christmas Carols events this year. We hope you can join us at a location near you.
St Mary’s Church, Dorchester Tue 9th December, 7pm
Christ Church, Swindon Wed 10th December, 7pm
All Saints’ Church, Branksome Park Tue 16th December, 7pm
Minster Church of St Denys, Warminster Fri 19th December, 7pm
Book your tree collection
Do something tree-mendous this Christmas!
Book to have your real tree collected after the festivities, and recycled by our friendly team for a donation of your choice.
Book before 6th January 2026. Specific postcodes apply.
For one week only, your donations to Julia’s House can be doubled, giving twice the impact! Julia’s House is taking part in the Big Give Christmas Challenge, the UK’s biggest match funding campaign. A £10 donation could become £20 - at no extra cost to you!
You’ll help provide twice the number of hospice care sessions, twice the benefits of the sensory room and twice the time with friends, nurses and carers.
Donate online at donate.biggive.org between midday on 2nd December and midday on 9th December. Donations will only be doubled while match funding is still available, thanks to our generous Big Give funders and supporters.
Last year, our Big Give campaign raised an amazing £90,000, helping local families like Isla’s receive the regular care they need. Find out more and sign up for an email alert
Thank you for helping Isla’s family
Last Christmas, we shared the story of little Isla, who was born at just 24 weeks. As a result, Isla developed lung disease and she has brain damage. Earlier this year, Isla was admitted to intensive care and was in hospital for a month when she got three nasty viruses back-to-back.
“We even celebrated Isla’s fourth birthday in hospital,” says mum Georgia. “It was really scary; her sister Darcey was so worried. I rang our Julia’s House Sibling Worker, Tracey, and she spent time with Darcey. It was just what she needed.”
Fortunately, Isla recovered, and soon after her family had a trip to Disneyland Paris, made possible with help from the Julia’s House family support team.
“The girls had so much fun, and we made lots of special
Christmas in our shops
Discover our new collection of beautiful Julia’s House Christmas cards,
Mum Georgia, Isla, Darcey and Nurse Amy
Isla with big sister Darcey, dad James and mum Georgia
Ziggy’s story
“Ziggy has an interest in everything!” says Mum, Jackie. “He’s fascinated by science - how the world works and weird but true facts.
“And Ziggy loves coming to the Julia’s House hospice! When he first arrives, he’ll dart from one room to the other, exploring all the activities and toys. Often, he likes to sit and play Lego with another boy who struggles with his sight, and they have a lovely time together.
“It’s so nice for Ziggy to be able to bond with other children his age at Julia’s House. He can just sit and play, and he can be himself; he doesn’t have to worry because everyone is accepted there.”
Crystals built up in his body from birth
Ziggy was born with an ultra-rare genetic condition called infantile primary hyperoxaluria type 1, which caused an enzyme to be missing in his liver.
“Without this enzyme, little oxalate crystals had built up in his tiny body, like limescale building up in a kettle,” says Jackie. “The crystals had got into his bones, his heart, his eyes, his kidneys, almost everywhere –causing devastating damage.”
At just four months old, Ziggy went into complete renal failure and needed to go on life support and constant dialysis. He would stay in intensive care for the next five months.
“It was heart wrenching to hand over all the care of my baby to someone else and not be able to cuddle him for that time,” says Jackie.
Ziggy with his dad Colin and mum Jackie
“I would take his bed covers home to be washed, just so that I could do something for him. I wanted him to have that smell of home, not hospital detergent.”
A chance at childhood
Less than 20 years ago, Ziggy’s condition would not have been treatable but medical advances have given him a chance at childhood.
To stop the crystals in their tracks, Ziggy needed years of dialysis and several pioneering, high-risk operations before he reached the age of four. This included two liver transplants at just 18 months old, and a kidney transplant.
Dad, Colin, donated his organs for both transplants, but disastrously Ziggy caught sepsis shortly after his first liver transplant, and another emergency transplant was needed to save Ziggy’s life.
Thankfully, and against the odds, Ziggy survived it all. And his new liver and kidney are keeping him well for now.
“At the age of four, Ziggy learnt to walk for the first time. It was an incredible moment! He even goes to a mainstream school now,” says Jackie.
But there are lasting effects from his condition; now aged eight years old, Ziggy is more susceptible to illness and infection, he has partial eyesight, and his bones are brittle so he can’t move or play football like other children his age. Because of his transplants, Ziggy is also vulnerable to serious and life-threatening complications and needs to be closely monitored.
“Ziggy’s been through so much – he’s getting on with life and he’s happy now – but he could go downhill again very rapidly,” says Jackie. “We don’t know what lies ahead for him, and actually it feels like we’re just at the beginning of a whole new journey.”
Julia’s House is a safe space
Throughout everything, Julia’s House has continued to be at the family’s side. This has been especially helpful for Jackie, who provides round-the-clock care for Ziggy.
“After Ziggy’s first visit to the hospice, I picked him up and saw just how much fun he’d had, and that sealed it for me that I’d finally made the right decision to let him go.”
“Julia’s House is like a little net that catches you before you hit the floor,” says Jackie.
“Since then, he’s even had a couple of sleepovers at Julia’s House. And that’s the only place he’s ever slept away from us, other than hospital. We’ve got nobody else I can leave Ziggy with who would be trained to deal with a medical emergency.
“It’s the ‘what ifs’ - what if he takes a sudden turn in the night? I know that at Julia’s House, there’s somebody with their eyes on Ziggy the whole time.”
Ziggy with his dad Colin in hospital
Ziggy with Carer Lulu
The Julia’s House ‘Fairy Godmothers’
Our trio of Family Support Workers
– Emma, Melissa and Cheryl – have been called ‘Fairy Godmothers’ by the families they help because they aim to make wishes come true.
“I say to families, just give me a call and we’ll do what we can to help,” says Melissa. “We can’t change their child’s condition or the family’s situation, but we can help to relieve some of their stresses and create joyful moments.”
Lucy, mum of two-year-old Sully, says, “Emma helps our family in so many ways – she’s a saint! I was really nervous about taking Sully to a little playgroup near me, so Emma
walked with me from my house to the group and stayed with me. Now I go by myself, and Sully thrives and loves it there. I’ve met other mums who have children that need extra support, and we can relate to each other, so it’s made me feel a lot less isolated as well.”
For other families, their wishes might be for a weekend away, and this is something that the team often organise. Around 40 families enjoyed stays at the Julia’s House caravan in the New Forest last year, and other holidays were gifted to families, all thanks to kind supporters.
When Lucy and Jake got married earlier this year, they had a ‘family honeymoon’ in the caravan with both their boys, Sully and big brother Reuben.
Lucy, Sully and Reuben
Melissa, Cheryl and Emma
Lucy, Jake, Sully and big brother Reuben
Lucy says, “When I told Emma the date of our wedding, she surprised us and booked the Julia’s House caravan for a whole week for our honeymoon. I cried when she told me; it was such a lovely gift.”
Gemma, mum of three-year-old Alfie, says, “We won a week’s holiday to Scotland through Julia’s House. It was absolutely stunning; it was just the most perfect week forgetting the stresses of home and making memories together.”
Emma says, “Recently, I also arranged for a family to stay in the most magical Lord of the Rings-inspired shire house in Wiltshire. It was generously gifted to us by the owners. And thanks to food donations, I was able to fill up the fridge for when the family arrived. It was a magical experience for their child, and such a lovely moment for the whole family to remember.”
Throughout the year, the Family Support Services team also organise around 80 events. Here, children, young people and families have a chance to make friends, socialise and do some of the things that other families experience but can be so much harder for them when they’re caring for a seriously ill child.
The activities range from overnight trips, pottery workshops and sports car experiences for mums and dads, to Santa visits and social gatherings that bring together the whole family. This summer’s Family Garden Party at Little Durnford Manor saw a record number of 213 family members attend!
Their practical support is also crucial. Last year, the family support team secured 140 grants totalling £135,500 for families. This could be spent on sky-high electricity bills or life-enhancing equipment, such as an accessible spa bath to soothe the skin of a teenager with paralysis.
Gemma says, “Melissa applied to a charity called Family Fund, so we could have a mobility car that could get us
to hospital and fit all of Alfie’s equipment inside. I didn’t even know the funding existed. Alfie can have hundreds of seizures a day, so that car has been our security at a time when life’s not secure.
“It’s amazing to have Melissa’s help because it can be a logistical nightmare trying to get the funding you need. She fights for Alfie to make sure he gets the right support. It means I can put my time and effort into looking after Alfie, rather than being sat on the end of a phone.”
Melissa says, “It can take hours to complete a Disability Living Allowance Form. It’s too time consuming and emotional for parents to do that – they’re exhausted, they’ve got so many hospital appointments. We help draft and submit the forms and persevere until they get what they’re entitled to.
“And when we’re successful, it’s such a hurrah moment! I’d like to say it’s the best feeling in the world.”
Melissa was interviewed by Together for Short Lives as one of their nominated ‘Hospice Week Heroes.’ Watch her film at youtube.com/@juliashousechildrenshospice
Gemma, Alfie and big brother Oliver
Gemma and Alfie
Meet the children
This summer, around 50 families enjoyed a festival-themed day of fun at our annual Family Garden Party! We had music, crafts, ponies, camels, games, a gazillion bubbles, plus more! And most importantly, all the children and families got to spend a lovely day together, relaxing and having the best time in the beautiful setting of Little Durnford Manor.
Meet some of the children who came along...
Marvellous Micah! Lovely Lily!
From teeny minibeasts to giant squid, Micah absolutely loves to actively explore everything in the outdoors and learn new nature facts.
“Micah’s wildlife knowledge is amazing – he’s like a walking encyclopaedia!” says Nurse Emily.
Eleven-year-old Micah was born with hypoplastic left heart syndrome. This rare and life-threatening cardiac condition has caused him to need lots of urgent operations. He also gets very tired and exhausted easily, so has to regularly take time to rest and relax.
As well as having fun at the Julia’s House hospice, Micah enjoys racing home from school on his special Triride motorised bike with his nurses and carers and playing Pokémon with them on his Nintendo Switch. “He’s trained us all how to play now!” says Emily.
“Lily is always smiling,” says Nurse Susie. “She’ll give a real belly laugh at the most unusual things that we do.”
Now nearly two, Lily was born with a genetic neurodevelopment disorder called PURA syndrome. This rare condition causes lots of issues, including seizures, respiratory problems, hypertonia (muscle stiffness) and feeding difficulties.
“One of Lily’s favourite places in the hospice is the sensory room – she loves all the lights, vibrations and bubbles,” says Susie.
And like many toddlers, Lily also loves nursery rhymes, singing and (of course) messy play! These are all activities that her Julia’s House nurses and carers set up for Lily when they visit her at home or when she comes to the Julia’s House hospice for a pre-school session or an overnight stay.
Micah loves playing in the hospice garden and exploring nature
Lily enjoys painting with her hands at the hospice
Lily and her mum Jodi had fun at our Family Garden Party
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Edwards. Julia’s