Thank you to everyone who has contributed to this edition of Our House. In particular, the Claire House families featured and the photographers and volunteers who gave up their time and lent us their skills.
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WELCOME TO OUR HOUSE
Hi everyone, I’m Vicky and I’d like to welcome you to the Autumn 2024 edition of Our House magazine, from Claire House Children’s Hospice.
This issue, it’s my son Luca on the front cover. Luca loves coming to the hospice, where he can see other children like him and have fun in the hydrotherapy pool.
In this edition, you will read about how Claire House has been there for us since Luca was a baby and how much the vital support means to our family.
There’s been lots going on at the hospice over the past few months and that’s all thanks to donations from
INSIDE THIS ISSUE
4 THERE TO RELY ON
Meet Charlie’s parents Shirley and Lee, who have been fortunate to have Claire House to rely on when they have no other support.
8
YOU’VE GOT A FRIEND IN ME
For the siblings of seriously or terminally ill children, it can feel like no one understands what you’re going through. Find out how Claire House offers them emotional support.
10
FOREVER LOVE
Parents Phil and Debra have been without their son Michael for longer than they had him. Read why Claire House still holds a special place in their hearts.
people like you. Claire House couldn’t support families like mine without your help, so we’d like to say a big thank you.
I hope you enjoy reading this issue of Our House.
Love, Vicky
14
THE IMPORTANCE OF DAY CARE
For some of our Claire House families, coming in for respite is not what they necessarily need right now. That is where our day care service comes in.
16
SO MUCH LOVE TO GIVE
Even with only half a working heart, Vicky’s son, Luca, has so much love to give. Find out how Claire House has been there to help build his confidence and offer support.
20
OUR HOUSE NEWS
Catch up with the latest news from your local children’s hospice.
there to rely on
Fourteen-year-old Charlie suffers from a series of complex medical conditions. With no other support, his family have been fortunate to have Claire House to
call on.
“We had no idea Charlie had any complex health problems when he was born,” shares mum Shirley from Anfield, Liverpool.
“For the first four months, he was developing normally, he was lifting his head up and doing everything you would expect.
“Then he had his first seizure.”
After initially being told that it was just a fever, the hospital diagnosed Charlie with a rare brain disorder called Lissencephaly that affects his feeding and swallowing.
“He can’t walk or talk or sit up,” says Shirley.
“After his diagnosis, Charlie continued to have seizures and the development we had seen in him just stopped.”
Charlie requires 24-hour round-the-clock care and when he was five years old, the family were referred to Claire House.
“Charlie is a lovely boy, he has such a big personality,” Shirley says.
“He enjoys lights and music and especially loves being around people.
“But it can be a lot.
“You never get a middle with Charlie. He can be happy, chilled and sleepy or he can be very unsettled. On those days, he is loud and can cry for quite some time.”
Shirley and Charlie’s dad Lee rely on support from Claire House.
“Charlie’s grandparents have always been hands-on and used to sometimes have him overnight.
“But they are in their 70s and he would just be too much for them to have now.”
Claire House has been there for the family in those moments when it becomes too hard.
“We can go night after night where he just will not sleep. It can be so exhausting,” Shirley explains.
“There have been nights where I have sat on the end of the bed and just cried because I don’t know why he won’t sleep or why he is in pain.
“I have then emailed Claire House in the early hours because we need their support.
“We don’t always expect them to help, because we know there are more families who need them, but they will always try to accommodate us where they can.”
Charlie goes to Claire House for both planned and emergency respite stays.
“We would be lost without Claire House,” says Shirley.
“There is no-one else I would trust to look after Charlie.
“When he comes to Claire House, we know that Charlie is well looked after and he loves being involved in all the activities at the hospice.
“At Claire House, every day is different for Charlie.
“He can go for days out that we would struggle to do, he can be part of a musical session or do crafts in the art room. All Charlie wants is to be included in whatever is happening at the hospice.
“The team at Claire House are like family. We can talk about anything and they are amazing with Charlie.”
For Shirley and Lee, respite stays offer a much-needed break
“When Charlie is at Claire House, we can recharge our batteries and finally sleep.
“We can do the things we don’t often get to do. Lee and I can go out for dinner with Charlie’s sister Beth or go out just the two of us, which doesn’t happen often.
“The hardest thing during this time is deciding whether to go out every day or sleep in.”
In the eight years they have been supported, Claire House has been able to offer Charlie and his family additional support at the crucial times they need it.
“If it wasn’t for Claire House, I don’t know where we would be,” says Shirley.
“Charlie’s condition means he suffers a lot with chest infections which has led to a lot of hospital stays.
“When he has been discharged, Claire House has really helped with step down care to make sure that transition back home is easier.
“Whenever he has been in hospital for a few weeks, they are always there to help afterwards.”
Claire House has also helped the family to make special memories.
“We have been so fortunate to have a number of treasured memories because of Claire House,” says Shirley.
“But for me, the one that always comes back to me is when Claire House arranged for us to switch on the Christmas lights at Cheshire Oaks.
“There is no-one else 1 would trust to look after charlie.”
“During the whole experience, we were made to feel like celebrities and Charlie was the superstar.
“He loves lights and to be able to switch those lights on, it was truly special and something that will stay with me forever.”
Charlie with dad Lee
you’ve got a
Having a brother or sister who is seriously or terminally ill can be incredibly hard to deal with. It can feel like not everyone understands what you’re going through.
Claire House offers emotional support to the families of children and young people who access our services.
This can be anything from one-to-one or group counselling, to fun days out where they can meet others in a similar situation.
“Our siblings form special bonds and it’s these unbreakable friendships and support networks that can get them through the most uncertain and upsetting times,” says Family Support Counsellor Catherine Livesey.
“They build friendships and they’re able to support each other through different stages of their Claire House journey.
“One of the lovely things about mixing siblings and bereaved siblings at our planned activities and groups is it can
give siblings who are potentially facing the loss of their own brother or sister a sense of hope.
“If they are aware of their sibling’s prognosis, they know they won’t be forgotten about – they’ll still be invited to sibling events and have a support system through Claire House.”
This support extends beyond Claire House, with WhatsApp groups set up, playdates arranged and friendships formed when life feels just too hard.
Ruby, whose family have been supported by Claire House, said: “Coming to the sibling events has really helped me over the years. I have been able to build friendships with others in a similar situation and we can all relate to each other.”
friend in me
Catherine continues: “It’s amazing to see how our sibling service has developed.
“Seeing siblings together, like watching them chatting on the coach as it pulls off to Alton Towers – knowing they’ll have an awesome time, make friends and grow in confidence – makes you smile.
“And it’s knowing the impact of those relationships will stay with them for so long.”
Last year, we offered 230 places on trips and events including Ninja Warrior, Alton Towers, soft play, an Easter egg hunt and ‘Sibfest’, as well as three different overnight residentials.
Catherine adds: “We have creative ways of working with children so they can express their thoughts and feelings.
“We were finding the number of children who needed our support was increasing. So, we’ve introduced Sibling Connect – a wellbeing and psychoeducational support group.
“Siblings finish the program with a wellness toolbox they can take home, complete with mental health resources from what they have learnt during the sessions.
“This doesn’t replace the direct therapeutic clinical support for those needing it, but it supports our growing number of referrals. And it’s an effective way to boost children’s coping skills, resilience, and an opportunity to network and make friends.”
forever love
Parents Phil and Debra have been without their son Michael for longer than they had him. Read why Claire House still holds a special place in their hearts.
“Our son Michael was a gorgeous little boy, with big brown eyes and dark hair,” says dad Phil from Chester.
“Like many five-year-olds, he loved dressing up and was into Pokémon and Scooby-Doo. He was a real character!
“As parents, we often thought about the future for our cheeky little boy and his older brother, Stephen.”
Heartbreakingly, Phil and Debra only had Michael in their lives for 13 years – he would have been 27 in August 2024.
Despite the years gone by, Claire House will always be special to the family.
“Claire House was there for us and that’s why we continue to support the charity all these years later,” says Phil, 62.
“It’s 13 years since Michael passed away. So, we’re now at the point where we’ve been without Michael for longer than we had him in our lives, which seems very poignant.
“It was absolutely heartbreaking when Michael was diagnosed with medulloblastoma – a cancerous brain tumour – when he was five.
“Michael had started being sick at school, so we took him to the doctors and he went to a specialist who didn’t find anything.”
The family then noticed Michael struggled to balance as he walked across his uncle’s uneven driveway, so they took him back to the doctors and to hospital.
“I remember being with Michael inside the scanner as he had his MRI scan. Soon after that, he was sent for surgery to remove the tangerine-sized tumour at The Walton Centre.
“After his operation, Michael had to learn how to speak again and he needed a wheelchair.”
Countless hospital stays, horrible conversations about cancer treatments, chemotherapy and uncertainty followed.
Over time, the family was put in touch with Claire House and Michael started to visit for physio and swimming in the hydrotherapy pool.
Phil says: “We visited a few times. We met other families and he had an overnight stay at the hospice in Wirral.
“After that it was community visits, which we thought were wonderful. It meant we could always look after Michael at home, which is where he was happiest. But we knew there was backup whenever we needed it.”
Although Michael got through the chemotherapy, the tumour came back again. He had eight years of treatment before he passed away.
“Claire House was a lifeline for us during Michael’s illness and his final days,” explains Phil.
“I will always remember him resting peacefully in the Butterfly Suite with a gorgeous grin on his face.”
The Butterfly Suite are dedicated rooms at Claire House where children can rest after they have passed away, as an alternative to a funeral home.
“For us, it was about having time together and with Michael. Others could come to the suite and sit with us. I hate to think what it would have been like to go to a funeral parlour rather than to the Butterfly Suite.
“When Michael passed away, Claire House took care of everything. We didn’t have to do anything, and they supported us all the way. So, we’ll always be very grateful to them.”
As well as providing practical support, Phil also praised Claire House for helping families to cope with the overwhelming grief of losing a child.
They were offered bereavement counselling to talk about Michael and the impact on Stephen, now 29.
Michael with dad Phil
“Claire House was a lifeline for us during Michael’s illness and his final days.”
Phil says: “I saw families fall apart through their child’s illness, but Debra and I were able to support each other. I would like to think we would have been able to keep together, even without support from others like Claire House, but I certainly think they made coping a lot easier. In that sense, Claire House helps to keep families together.”
After Michael passed away, Phil and Debra wanted to raise awareness for the HeadSmart campaign, which educates about brain tumour symptoms. They were also determined to do some things for charity.
“We set up the ‘Michael’s Whatever’ appeal, named after his favourite phrase, and we raised money for charities, including £7,068 for Claire House.
“The work Claire House do is invaluable.
“Debra volunteered at our local Claire House shop in Chester and did well selling books online for the charity.
“And I’m a regular donor to Claire House and I’ve done a couple of charity bike rides, including cycling from Mizen Head to Malin Head on the Wild Atlantic Way.”
Phil’s challenge involved nine days of cycling in Ireland, covering 591 miles and climbing 31,000 feet, to raise more than £1,930 in August 2023.
“I felt privileged that I could support Claire House, who was there for us throughout our journey,” explains Phil.
“Claire House was absolutely fantastic with us – it’s something we’ll never forget.”
Michael with mum Debra, dad Phil and brother Stephen
THE IMPORTANCE OF DAY CARE
For some of the families that are supported by Claire House, coming in for respite is not what they necessarily need right now. That is where our day care service comes in.
Families can come to our Wirral or Liverpool sites, or the team can visit a family’s home. Whilst there, the Claire House team will look after all of the medical needs of the child, while making sure they, and their family if present, enjoy some fun activities.
Tamara, whose daughter Aurora receives sessions at home, said: “Aurora always loves her day care sessions. The Claire House team always come with lots of activities; story time, painting and messy play which Aurora loves! As a mum, it gives me a chance to talk and voice my concerns about Aurora and the team always listen and give great advice.”
Speaking from the day care service team, Claire Jones, Care Coordination Team Lead, said: “We have some families who are a little wary about leaving their child for respite initially. Day care offers a nice introduction to Claire House and is a great way to meet the team and build relationships.”
Families ask for day care for many different reasons, whether it be to spend time with their other child or children,
Aurora during her day care sessions
attend meetings or appointments, get some sleep or even tidy their house.
“The biggest difference many families have said is that they get to spend time with their other children,” says Claire.
“Parents can have days out they often cannot do because it would usually mean having to bring all the equipment their seriously ill child needs, as well as having to stop for feeds. But on day care days, these days are all about the siblings.”
Claire, whose son Max comes to Claire House for his sessions, said: “When Max goes for day care sessions, it means I can spend some quality one-to-one time with
my young daughter. The last time we took our dog Roey to the dog park while Max was enjoying time with other children.”
For the families we support, the day care service provides the reassurance of someone they can trust.
Claire continues: “Because it is monthly, we are getting to see these families regularly, and we build up a relationship so they know they can rely on us.”
As a result of the day care service and building a trust with Claire House, the hospice has found that some families who were initially reluctant to leave their child for a respite day have found it easier to do so.
Max in his day care session at Claire House
so much love to give
Even with only half a working heart, Vicky’s son, Luca, has so much love to give. Here, she shares how Claire House has been there to help build his confidence and offer support.
“We knew something was wrong at Luca’s 20 week scan,” says Vicky. “When he was born, they confirmed it was hypoplastic left heart syndrome, which means he was born with half a working heart.”
Luca had his first surgery at just six days old.
“We stayed in the hospital for six weeks afterwards and, with it being during the Covid pandemic, his sisters couldn’t even meet him until he was seven weeks old.”
Luca had severe reflux and, as a result, struggled to put on weight but after his second surgery, when he was four and a half months old, things started to settle.
Then Vicky was then introduced to Claire House Children’s Hospice.
“I was initially in denial about needing Claire House. At the time I just could not understand what they could offer Luca.
“But the team were wonderful and invited us to their baby group.
“For a mum who’d had to isolate, we hadn’t been to any groups, like with his sisters.
“Coming to the baby group at Claire House was amazing. I could be around other parents who were like us in a safe environment. I didn’t feel quite so alone.
“Luca doesn’t do well with new people. A lot of the time, he knows he’s going to be poked and prodded at appointments so he gets upset or makes himself sick.
“Coming to Claire House, he’s learnt it’s a safe and lovely place.
“When we first went to the baby group, he would just stay by me and wouldn’t get his feet painted.
“But he got used to seeing other babies getting involved and one day he just put his foot out to have it done. It meant so much to see that.”
Luca now attends the hospice’s Stay & Play sessions and has regular time with Laura from the physio team in the hydrotherapy pool at Claire House.
Laura says: “I first met Luca at baby group and since then I’ve worked closely with him in aquatic therapy sessions.
“We had to work to build his confidence in coming in the pool with me. Initially, he would cling to mum but he’s so confident now and loves being in the water.”
“For me, it’s lovely to watch Luca play and enjoy himself,” says Vicky.
“It is rare for me to get those moments away from Claire House.
“I always have to be mum and carer, but when I come to Claire House, I can just see Luca being Luca.”
Being in the hydrotherapy pool helps with Luca’s circulation because the water is warmer than usual swimming pools and is great exercise.
Luca with mum Vicky, dad Lukasz and sisters Morgan and Sophie
“I always have to be mum and carer, but when I come to Claire House, I can just see Luca being Luca.”
“Luca would never have been able to go swimming if it wasn’t at Claire House. Public swimming pools are just too cold for him and his body would have to work too hard to warm back up again,” explains Vicky.
“For someone who has half a working heart, Luca just loves so much. He loves life and has so much energy, he just wants to do everything from the moment he wakes up.
“But Luca gets tired easily. He’s a typical toddler and doesn’t always want to be carried, but he can become out of breath when he walks and even turns blue.
“We have to manage so many aspects of his life because of that.
“He uses a wheelchair at preschool for distances and we take a pushchair out with us. This is hard for him as he sees other children and wants to run after them.
“But at Claire House, he sees children who can’t run like him, others in wheelchairs, and he seems so comfortable.
“For me, I get to speak to other adults at Claire House who just understand and that’s so important. After Luca’s time in the pool, I talk to Laura while Luca enjoys a well-deserved cake.
“Many others just look at Luca and think he looks like a normal toddler. Until he starts walking and gets out of breath, they don’t understand how poorly he is.
“But I don’t get that at Claire House. They know, they understand and are there for us.”
Luca in the hydrotherapy pool at Claire House with Laura, Assistant Practitioner
CLAIRE HOUSE NEWS
Sunrise summit
In June, a group of supporters took part in Yr Wyddfa (Snowdon) at Night, hiking the highest peak in England and Wales before summitting at sunrise. The group consisted of Claire House staff and supporters, including 24 walkers who raised £24,000 together in memory of Bethany Price to commemorate her 24th birthday, while David Willcox trekked in memory of his baby daughter Ava. David said: “It was important to raise funds for Claire House, as they were the sanctuary that cradled my wife and I in our darkest hour. Trekking to the top of Snowdon was an incredible moment that I won’t forget.”
New Look
This Summer, our Teen Lounge and Quiet Lounge in the hospice were fully renovated, thanks to generous funding from ‘HSBC in the Community’. The renovation included new flooring, furniture, and a media wall.
Lawren Harris, Play and Activities Team Leader, said: “As soon as it was completed, kids and staff grabbed the popcorn and enjoyed a movie. The media wall is amazing for the teenagers staying in the hospice.”
Heidi Power
Nine-year-old Heidi set off on an epic challenge this year to travel the distance between the 12 original football league teams. Heidi first visited Deepdale Stadium, home of Preston North End and finished at The Hawthorns, where West Bromich Albion play. She fundraised for both Claire House and Alzheimer’s Research UK, covering the equivalent of 215 miles.
We’re all going on a summer holiday
Our young adult group had their first residential trip away this summer, visiting outdoor activities centre Bendrigg in Cumbria for five days. The group took part in rock climbing, canoeing and caving, amongst other exciting activities. For many in the group, this was the first time that they had ever been away with friends, taking on new challenges in the outdoors.
Doing tonnes for the environment
Thanks to your donations, last year our charity shops saved 290 tonnes of textiles from going to landfill. This is enough to fill 58 Olympicsized swimming pools and could save enough energy to power 1,000 homes for a year. Not only that, by recycling our shops have saved the planet from the CO2 equivalent of more than 1,160 transatlantic flights.
thank you for your support
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the greatest gift of all - a gift in your
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Hear from a local solicitor about the importance of a valid Will Find out how you can have a simple Will written or updated for free Hear about the future plans for your local children’s hospice
Plus plenty of tea and cake!
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