Because of you, we can be there to support families like Harlow’s whenever and wherever they need us most.
Editor: Laura Kelly laura.kelly@clairehouse.org.uk
Contributors: Jessica Arnell, Tina Miles, Mark Pearson
Photography: Jump-Imaging C.I.C
Design: creativedesignwork.co.uk
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.
Registered Charity no: 1004058 Company no: 02620240
WELCOME TO OUR HOUSE
Hi everyone, I’m Zoey and I’d like to welcome you to the Spring 2025 edition of Our House magazine, from Claire House Children’s Hospice.
This issue, it’s my daughter Harlow on the front cover. Harlow got to enjoy just being a baby at the Claire House Baby Group and now enjoys coming for respite.
In this edition, you will read about how Claire House were also there for me with my son Liam and how they continue to be there since Harlow was referred to the hospice.
There’s been lots going on at the hospice over the past few months and that’s all
thanks to donations from 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, Zoey
14
HEART OF THE HOSPICE
With a major makeover of our hospice kitchen and a fabulous transformation of the dining room, families now have a wonderful space to spend time together.
4 THERE FOR THE WHOLE FAMILY
Meet Isla’s mummy, Fiona, and nan, Joanne. Read how Claire House has become their haven since being there for the whole family. 8 A DAY IN THE LIFE
Meet Laura, Palliative Care Nurse Specialist who works in the community with the children and young adults we support to ensure they get the right care at the right time.
10 OUR SAFE PLACE
Parents Joanne and John Paul tragically lost their daughters in 2020 and 2022. Read how Claire House gave them the strength to go on and have their rainbow baby.
16
ON THE ROLLERCOASTER OF LIFE
For feisty toddler Harlow, Claire House provides a safe place to play and thrive. For her mum Zoey, it is also a comforting reminder of the support she received with son Liam.
20
OUR HOUSE NEWS
Catch up with the latest news from your local children’s hospice.
22
A LEGACY OF LOVE
Meet Estelle, who has been supporting Claire House since it was founded. From fundraising to volunteering, she shares why she was inspired to leave a gift in her Will to the charity.
there for the whole family
For four-year-old Isla and her family, Claire House Children’s Hospice has become their haven. Here Isla’s mum, Fiona, and nan, Joanne, share how the local children’s hospice has been there for the whole family.
“Isla is my angel girl,” shares Fiona
“She is the most content, happiest, gorgeous little girl. But she faces a lot of struggles.”
Isla was born with a rare genetic disorder, CDKL5 Deficiency Disorder, that results in seizures, which are difficult to control.
“Isla can’t tell you that she loves you. She can’t give you a hug, but when she looks at you, you get that hug, you get that validation from her.
“To be around Isla, you would never think she’s been through what she has. She is just the strongest, bravest, happiest little girl,” says Fiona.
Isla was referred to Claire House three years ago and since then, the children’s hospice has been there to support the whole family.
Isla’s nan, Joanne, who has come with the family to Claire House, shares:
“When Fiona was introduced to Claire House, she thought it was simply for the end of life.
“But then we came to visit the hospice, I was so proud of them for seeing how much Claire House could offer.
“It was a relief for me, to know that Claire House was going to be there for them throughout Isla’s life.”
Not only has the hospice team supported the family in hospital, but they also provide overnight respite stays for Isla and sibling support for her older sister Gracie and twin sister Freya.
“I remember the first time that Isla was staying, I felt so anxious,” said Fiona.
“It can feel daunting leaving your child for the first stay, but Claire House was great.
“We had been to sibling days and sessions, so I was able to build up friendships and trust with the staff at Claire House.
“While Isla was having a fun time at the hospice, I could have some focused time with her sisters.
“I was able to take them to the zoo, something which is not as easy to do with Isla.
“And this time meant that I could relax and recharge.
“It truly meant so much to me and was made extra special because I knew Isla was having a great time with the wonderful team at the hospice.”
For Nan Joanne, it is a great relief to see how happy Isla is at Claire House, knowing the positive impact it is having on her son (Isla’s dad) and Fiona.
Isla with mum Fiona
“It truly helps just taking that little bit of pressure off,” says Joanne.
“We know that when Isla is staying at Claire House, she is safe, loved and content.
“Although Isla is non-verbal, each time I have gone with them, she just gets excited and will move her arms and legs.
“I truly believe she knows her surroundings there and is just happy.”
Fiona adds: “Whether she is playing in the garden, doing arts and crafts or having some time in the hydrotherapy pool, Isla just loves being at Claire House.
“Claire House has given Isla a better chance at life, at being able to enjoy her life.
“And for me, that is everything.”
could fund a morning of play
Isla with her sisters
Isla with mum Fiona, her sisters and nan Joanne
a day in the life
Meet Laura, Palliative Care Nurse Specialist who works in the community with the children and young adults we support.
It is Laura’s job to ensure families are getting exactly the right care, at the right time. That might mean providing emotional support or helping with medical needs. This can make a massive difference to families going through some of the toughest of times.
“Every day is different,” says Laura.
“As much as we plan, the nature of palliative care means our days can quickly change. But the important thing for me is knowing that my visit can make a difference to a family.
“Whether that is making changes that make a child more comfortable or having a cuppa and chat with a parent to help them cope with what their family are going through.
“I can start my day in Cheshire meeting with the family of a young child who has a muscle wasting disorder to discuss the care they need.
“This means understanding how their child is currently doing and going over their symptoms.
“By doing this, I can understand how they are coping and whether they need changes to some of their medication. This can make a big difference and may save the family a hospital visit.
“As well as discussing care, we will explore the family’s wishes for now and
how they want their child to be treated and looked after should their condition get worse. This is far easier to do in advance, when the family is not under pressure and have time to understand the options available.
“For me it is so rewarding, knowing I have alleviated some of that family’s worries, as well as helping to ensure the child or young adult is more comfortable.
“From the visit in Cheshire, I then travel to Merseyside after receiving a call from a young adult’s mum to say her son is experiencing pain and has trouble with his breathing.
“Once I get to their home, I find he is really struggling and we need to review his symptoms.
“While we can work with the families and their doctors to assess their medical needs, we are fortunate that we can also offer other services at Claire House.
“For this family, I looked at how our Complementary Therapies Team could arrange some massages to reduce their son’s pain.
“Alongside this, I discussed how our Physiotherapists could offer exercises and techniques to help with his breathing.
“We can never know how these families might need us on any particular day and will be there in the best way we can.
£29
could fund an hour of specialist nurse care
“Once all my visits are done, my day doesn’t end there.
“To ensure that each child or young adult’s needs are being met by the different services, I talk to all the healthcare teams involved in their care. This is to check they are fully up to date with any of the changes following my visits and that we are all on the same page as to what the child or young adult needs going forward.
“My days might be busy, and you can never fully know what they will entail, but after
working at Claire House for 10 years now, every day I know I am helping to make a difference to the families we support.
“It is something you can never really get used to, the impact we make to these children, young adults and their families.”
Care staff like Laura are only out in your community every day because of people like you who fundraise, donate and support Claire House.
our safe place
Claire House supported the Mercer family when they lost their daughters Ella in 2020 and Libby in 2022. Here mum Joanne and dad John Paul tell how the charity gave them the strength to go on to have their rainbow baby, Freya.
Preparing to welcome their new addition, Joanne and John Paul (JP) couldn’t have been more excited to tell daughter Niamh she would be a big sister.
But their dreams of future adventures with their new baby became uncertain after their 12-week scan.
Baby Ella was diagnosed with full Edwards’ syndrome, a genetic condition that affects babies when they’re in the womb. Sadly, most babies die before or soon after they are born.
“Claire House was there for us every step – from the scan to every hospital appointment and all the way through my pregnancy,” explains mum Joanne, from Wallasey in Wirral.
“Ella was born on March 17, St Patrick’s Day, in 2020, which was just before lockdown and she passed away the next day in hospital. So as the world was going crazy, Claire House looked after us and made us feel safe,” adds JP.
During the Covid pandemic, the Mercer family used the hospice’s Butterfly Suite – a room where a child can rest as an alternative to a funeral directors.
“Claire House kept our family safe during a really vulnerable time. And they were there for a second time when things didn’t go right with Libby,” says JP.
Losing their baby girl Ella was the most painful experience for the family. Devastatingly, they would go through it again less than two years later.
“We went for our 20-week scan the week before Christmas and were told things didn’t look right,” explains Joanne. “It was very surreal. To think that something like that was happening again was hard to comprehend, but we were still in touch with Claire House.
“With Libby, we never found out what it was. We just know it wasn’t any of the things that her sister had. Every hospital appointment was emotionally draining, hearing our little one would pass away and was in discomfort, but Claire House was alongside us.”
The couple received vital bereavement support that got them through losing not one but two babies. And their counselling sessions helped them to support Niamh, now nine.
Joanne says: “It was so important because Niamh was four when we had Ella and six when we had Libby. She’d seen my tummy grow, and she was waiting for these little babies to arrive, so we were grieving together as a family.
“Staying in the Butterfly Suite wasn’t sad for Niamh, it was cosy and comfortable. Sharon and Jenni from the Butterfly Team were so brilliant and skilled, knowing when
Joanne and Niamh
we needed support or some space. They were so respectful and thoughtful – doing things like moving the room around to make it personal to Libby because it was around the same time of year we lost Ella.”
Without the ongoing support, Joanne and JP say they may never have tried for another child after their losses. But they have since welcomed their beautiful rainbow baby, Freya, who was born in November 2023.
JP says: “We cherish the memory making with Ella and Libby and all the amazing things the team helped us with after the girls passed away.
“I feel lucky we had Claire House when we needed them. I will always remember having a bed there when I felt I couldn’t leave Ella or being snuggled up and reading with Niamh in the Butterfly Suite, knowing we were together as a family.
£196
could fund a day of butterfly support for a family
“We’ve got treasured memories because of Claire House.”
The family take comfort in the many compassionate gestures such staff playing nursery rhymes as their baby rested in the Butterfly Suite or marking special occasions.
“Despite everything going on when we lost Ella, Claire House made Mother’s Day special for Niamh even though we were grieving,” says Joanne. “We had a lovely roast dinner, and the staff made Niamh feel special, which is so important to siblings.”
Says JP: “We don’t feel it’s a place where we brought our babies after they passed away. For us, it’s a very special place with special people that looked after us. Everybody cares”.
To continue to honour their babies, the family attend Memory Day and take part in events, organised by and in aid of the hospice, such as the Claire Bear 3K and the Lantern Walk.
JP says: “It’s an opportunity to do something special as a family, while raising money for Claire House we get to keep our girls in our memories.”
John Paul with Niamh and Freya
heart of the hospice
With a major makeover of our hospice kitchen and a fabulous transformation of the dining room, families now have a wonderful space to spend time together.
As the heart of the hospice, the kitchen and dining room is a much-loved space for family meals, activities and even special visits.
As one family put it: “We spent many days at Claire House in the dining room and I think of kind people and having meals to keep us going when we felt like the world had ended.”
But after over 15 years, it was time for a much-needed refresh. Following a six-week renovation, James, 17, who is supported by the hospice, cut the ribbon to officially open the space.
Our kitchen is now something a professional chef would be proud of! With stainlesssteel units on wheels and modern appliances, it’s both practical and cost effective. The new dining room provides a fresh, social space for those coming into the hospice for respite stays, day care or Family Splash in the hydrotherapy pool.
It will also make things easier for bereaved families, offering a private, cosy space to get homemade food and drinks 24/7,
thanks to a new self-service area, complete with a barista-style coffee machine.
Hospice Manager Jenni Bell said: “You can’t underestimate the difference the kitchen and dining room makes to families. Often, they’ll talk about the food, the cake, being fed and cared for at the most difficult of times. Or they’ll remember happy moments and memory making in the dining room.
“It’s more modern and welcoming. And the middle table is portable so it can be removed, meaning children in wheelchairs and beds can still experience this caféstyle dining room.”
The dining room was funded by the Morrisons Building a Legacy Together
Grant, which came through Morrisons’ partnership with Together for Short Lives.
Claire House CEO David Pastor said: “Through the grant, we have created this wonderful space that is at the heart of the hospice. It’s a real privilege to offer families a dining room they’d have at home if money was no object.
“We support babies, children and young adults and their families with end-of-life care and there will be occasions when this space will be the last place families will spend real time together.
“And we also care for babies who may never go home, so to create memories in our dining room is precious.”
Ruth Varey, Hospice Inpatient Manager and Jenni Bell, Head of Hospice Care, Quality and Governance
on the rollercoaster of life
For feisty two-year-old Harlow, Claire House provides a safe place to play and thrive. For mum Zoey, it is a comforting reminder of the support she received with son Liam who sadly passed away, aged seven.
“Harlow was born prematurely at 31 weeks,” says mum Zoey, from West Derby, Liverpool. “At the time, they thought she was okay.
“We then found out she had congenital heart defects and had hypoplastic right lung. She also wasn’t tolerating her feeds. And even after she started being fed through an IV, she wasn’t thriving or developing.”
Throughout this time, Harlow was in and out of hospital as she needed extra support with her breathing.
“We were told by one of the respiratory doctors that there was not much more they could do for Harlow from a breathing perspective and that we should think about planning for the worst while hoping for the best.”
Zoey had been supported by Claire House previously, as they had cared for her son Liam until he died aged seven in July 2021.
“Claire House supported us throughout Liam’s condition and especially while he was in hospital,” explains Zoey.
“Even when he wasn’t well enough to come home, they enabled us to leave the ward and come to their West Derby site for his birthday. It was truly special.
“But I will never be able to thank them enough for the support they gave once Liam passed away. The team supported me through the whole funeral process.
“They did loads of memory making with us, getting Liam’s handprints and making necklaces. And even after the
funeral, they have stayed in touch and remembered every key date.”
Laura, from the hospice’s Rapid Response Team kept in touch and was there again when Harlow was referred to Claire House.
“Laura got me through some of my darkest days,” shares Zoey.
“She was always there for me, whether I needed to rant or just have someone to listen to me.”
Zoey’s son Liam spent more than a year in hospital.
“It was hard that sometimes Liam did not want to go home as he thought hospital was home. I did not want that for Harlow.
“Being in hospital is really tough for me because it brings back such bad memories.”
Laura and the Claire House team have worked closely with Zoey and the hospital to ensure that Harlow can spend as much time at home as she can.
“Laura made it possible for us to get out of hospital and go home.
“While Harlow’s overall condition is undiagnosed, she suffers with a variety of complex medical conditions which means she is in and out of hospital.
“Laura supports me with everything. Whether that is coming to appointments, supporting with any new treatments or helping with difficult conversations to ensure we are doing the best thing for Harlow.
“She has truly kept me sane.”
Harlow attended the Claire House Baby Group from when she was six months old, at both the Wirral hospice and Liverpool site, until she graduated the group at 18 months old.
Zoey says: “I could never take Harlow to the usual baby groups, they would not have been right for her. But coming to the Claire House Baby Group has meant so much.
“Even though all our babies are different, it is reassuring to talk to other parents who are going through similar things to us.
“Harlow loved the group, it was somewhere she could just be a baby and,
Liam, Zoey’s son who was supported by Claire House
as she grew, cause more trouble and entertain the staff!”
As well as attending the Claire House Baby Group, and being supported at home and in hospital, Harlow now has respite care.
“When Harlow comes in for respite, she keeps everyone on their toes,” shares Zoey.
“The first time she stayed, she was crawling everywhere and did not care that she was dragging all of her cables after her!
“When she stays at Claire House, it truly means I can just be mum. The team take over her medical needs, even when
we have been given a new routine, medication or equipment.”
Claire House will continue to be there for the family wherever and whenever they need it.
“After everything with Liam, to find out that Harlow was so unwell I was in a really bad place,” Zoey says.
“But to have Claire House there, it changed everything. I didn’t feel alone anymore.
“Thanks to Claire House I have got all my special memories of Liam and they have given Harlow the chance of life – this rollercoaster of life.”
CLAIRE HOUSE NEWS
24 Hour Powersports
Liam, 20, who has been supported by Claire House for the past 12 years organised an exhilarating and exhausting charity fundraiser in aid of the hospice.
Liam and his hockey team played powerchair hockey and football for a full 24 hours! The event supported three worthy causes and helped disabled people across the North West.
He said: “Claire House has given me so much confidence, providing the social group so I can connect with similar people and make new friends.
“It’s played a massive part in me feeling comfortable enough to go to university, move out of home and try new things. And the hydrotherapy pool has helped me greatly.
“So, this fundraiser was a fun way to give something back to my community, help other disabled people and get others involved too.”
The event raised £1,921 for Claire House Children’s Hospice, Greenbank Sports Academy and GB Power Hockey.
Dame Patricia Routledge’s heart warming visit
Earlier this year, we were honoured with a visit from actress Dame Patricia Routledge who popped in after she was awarded the Freedom of Wirral by the Mayor.
Dame Patricia, who’s best known for her character Hyacinth Bucket in the BBC sitcom, Keeping Up Appearances, has supported Claire House since the very beginning and was keen to meet the children and families.
During her time at the hospice, she joined in a storytelling session and gave our new dining room the seal of approval, after enjoying tea and cake with the children and staff.
“I am proud to be associated with Claire House Children’s Hospice and the wonderful and necessary work it continues to do. My visits there always uplift my spirits; the atmosphere is such a happy and positive one, the building full of light and colour. Long may it thrive,” said Dame Patricia.
Row, row, row your boat
Super supporter Damian, from Crosby, rowed 3,000 nautical miles across the Atlantic Ocean for Claire House as part of a 10-person crew. They set off in their boat, The Roxy, on Sunday 1st December and rowed for 47 days, through every condition imaginable.
Damian said: “My goal was always to cross the ocean for Claire House, no matter how physically or mentally tough it was. I took pride in wearing their logo, and having the Claire House smiley face on the side of our boat throughout, especially as we rowed into land at Antigua.”
The mental health nurse has so far raised over £13,000 as part of his epic challenge.
Running Together
The family of Bethany Devlin organised a 5K run in her memory to commemorate her 21st birthday.
Bethany passed away in 2018 and her family were supported by Claire House. Mum Angela said: “When Bethany died, we used the Butterfly Suite at Claire House and stayed with her as a family up until her funeral.
“The care Claire House gave us didn’t end there; in fact, we are still receiving support to this day, from counselling to the fun sibling events that her three younger brothers attend. By holding events in Bethany’s name not only do we keep her memory alive but we get to help raise much needed funds for the most amazing place.”
The Bethany Jane 5K sold out, with 250 people taking part in Birkenhead Park, raising over £6,500, and everyone was cheered over the finish line by mum Angela, dad Sean, and Bethany’s brothers.
Wreaths of love
Year 5 students at Christ Church Primary School in Moreton crafted beautiful autumn wreaths adorned with heartfelt messages. The children created the wreaths to express their gratitude for the hard work and dedication of the hospice staff in caring for babies, children, young adults, and their families. The students’ messages highlighted the kindness and compassion shown by the hospice team.
The project was inspired by a visit from Claire House Community Fundraiser Emma, who shared stories about Claire House Children’s Hospice and taught the students some Makaton.
“We loved receiving the wreaths and reading all the lovely messages from the children, they made everyone smile,” said Emma.
The wreaths were proudly displayed at the hospice, bringing a touch of autumnal cheer and a reminder of the community’s appreciation for the invaluable support provided by Claire House.
A LEGACY OF LOVE
30 years ago, when Estelle Kelly heard about the need for a much-needed children’s hospice in Wirral, she felt inspired to help.
With fundraising underway in her community, Estelle along with her mum Pat and sister Lesley began raising money themselves.
Claire House Children’s Hospice opened its doors in December 1998 – as a haven for seriously ill children and young adults, where families could stay together.
Years later, Estelle, 65, became a reception volunteer at Claire House, where she sees first-hand the vital support.
3 in 10 children we care for are funded by gifts in wills.
To find out how a gift in your Will can make a difference, call us on 0151 343 0883, email giftsinwills@clairehouse.org.uk or visit clairehouse.org.uk/wills
You will also find a flier along with this magazine which you can complete and return if that is easier for you.
She says: “The services provided by the care team, staff and volunteers make a real difference to everyone who uses the hospice.
“It’s necessary for families to get through the tough days, have a break and for parents and siblings to meet others in similar experiences.”
Looking ahead, the former radio producer has decided to leave a gift in her Will to Claire House, following in the footsteps of her mum and dad, Neville.
“They wanted to support Claire House, knowing the difference the money would make to the hospice.
“What a wonderful gift, helping the charity to continue to provide all the services they do now, and help more children and families in the future.”
at clairehouse.org.uk/donate
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A Gift in your Will could support a child like Harlow
