Issuu

OUR HOUSE

A BEACON OF lIGHT

Because of you, Claire House can be there to support families like Sauda’s whenever and wherever they need us most.

SPRING 2024

Editor: Laura Kelly

laura.kelly@clairehouse.org.uk

Contributors:

Jessica Arnell, Hannah Shannon, Mark Hobley, Mark Pearson, Tina Miles

Photography: Jump-Imaging C.I.C

Design: coppermedia.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 leant us their skills.

Claire House Children’s Hospice, Clatterbridge Road, Bebington, CH63 4JD 0151 343 0883

clairehouse.org.uk

Registered Charity no: 1004058 Company no: 02620240

WELCOME TO OUR HOUSE

INSIDE THIS ISSUE

4 A BEACON OF LIGHT

Meet Sauda’s parents Aizaz and Naznin who, due to having no extended family to rely on, see Claire House as their second home.

ONE SWING AT A TIME

Find out how a bag of clubs and meeting other parents and grandparents has made the Claire House Golf Days so important to families.

A MAGICAL CONNECTION

Hear from bereaved mum Charlotte, who explains how Claire House was there for her and her husband before and after their son Finley passed away.

Hi everyone, I’m Aizaz and I’d like to welcome you to the Spring 2024 edition of Our House magazine, from Claire House Children’s Hospice.

In this edition, you will read about how Claire House has made a world of difference to our family with the support and care they provide. 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, Aizaz

MORE THAN JUST A SWIM

Find out how, for the children and young people we support, the hydrotherapy pool at Claire House offers more than your usual swim.

THE BIGGEST SMILE

Hear from mum Joanne who explains how Claire House always brings a smile to her daughter Faye’s face.

OUR HOUSE NEWS

Catch up with the latest news from your local children’s hospice.

a beacon of light

With their daughter, Sauda, seriously ill and no extended family to turn to, hear how Claire House has become a source of unwavering support for dad Aizaz and mum Naznin.

“Our five-year-old daughter Sauda loves to talk, she is very sociable and chatty. She loves anything Disney, in fact she is our own little princess. She’s always singing and dancing to her favourite Moana songs and wants to be a singer when she grows up.

To look at Sauda from the outside you wouldn’t know anything was wrong, but on the inside she has lots of complex medical conditions that affect her heart, brain, gut, muscles and lungs.

When Sauda was born we had recently moved to the UK from India, we didn’t know much about the NHS, we had no family here and no support.

It was in her first days of life that we realised something was not right. We took her to our local hospital and they ran lots of tests. Within a few hours our whole lives changed.

We were transferred to Alder Hey Children’s Hospital and stayed there for two years.

Sauda was diagnosed with complex conditions which mean she can be very sick. She needs numerous medications and has to have oxygen through a tube into her nose to help her breathe, she can become tired very quickly and needs an adult to help her do everything.

She has had a lot of challenges in life, having had eight surgeries in five years, but she is a fighter. Despite everything she is faced with, Sauda is always smiling.

At first we didn’t have any support, we spent two years in hospital and then were discharged.

It was the community nurse that told us about Claire House and how they could help not just Sauda, but our whole family.

Our eldest son Mohammed was fiveyears-old when Sauda was born and it was very hard for him.

We spent all of our time in hospital, as we were told Sauda could pass away at any time.

It was challenging, to say the least. Mohammed had to miss school and time with his friends. As parents, it was heart-wrenching for us to see him go through such experiences, and we struggled to explain why these things were happening.

But Claire House have been a beacon of light in our lives. The care and support they have provided has made a world of difference to us all, especially Mohammed. They’ve helped him to have fun and make memories that he cherishes, like playing golf with other siblings who have sick brothers and sisters. He also had so much fun at the sibling Chocolate Factory event.

As a family, the hospice has had a profound impact on our lives, becoming a second home and a source of unwavering support. With no extended family to rely on, Claire House have become an integral part of our support system. Especially after the birth of our baby last year. We have come to realise just how vital their support is.

At first we weren’t interested in overnight stays at the hospice for Sauda, but after the birth of our son we decided we would try it.

To begin with we didn’t want to leave her as we had never been apart from her, but Claire House built our confidence and know how to take care of all of Sauda’s medical needs.

“The hospice has had a profound impact on our lives, becoming a second home and a source of unwavering support.”

Sauda with dad Aizaz, mum Naznin and brother Mohammed

Sauda loves staying at Claire House, but it’s made the biggest difference to us.

Whilst Sauda is at Claire House, we can spend time together with our sons, Mohammed and Zaid, and can make plans. It’s really difficult to make plans as Sauda can become suddenly unwell, but when she is at Claire House we have a few days to ourselves.

Recently, we were able to go out to dinner together just the two of us whilst Sauda was at the hospice, which we haven’t been able to do for such a long time, it was so nice.

The care Claire House provide for Sauda goes beyond words. She is given the attention and tailored experiences she needs, making her stay eventful and filled with joy.

Sauda has so much fun, partying in the art room, cooking, baking and drawing and they even arrange princesses to visit when she stays. As parents, we can relax knowing that she is receiving the very best care.

Claire House is a lifeline for us. The impact they’ve had on our lives is immeasurable, and we are forever grateful for their unwavering support, care and love.”

Sauda with dad Aizaz

one swing at a time

Find out how a bag of clubs, some tees and being with other parents similar to themselves, has made the Claire House Golf Days a regular fixture for many of the parents and grandparents we support.

For the parents of the children and young people Claire House supports, golf isn’t always something they get to enjoy. Busy schedules or the demands of caring for a seriously ill child can mean that it is often difficult to take time to themselves, but the

Claire House Golf Days have become a safe place to be with others they can relate to.

Peter, whose daughter comes to Claire House, says: “Claire House Golf Days are always great fun. They give

you a chance to have a break from your caring role with a group of other parents and grandparents who are in the same situation.

“Everyone is so friendly, welcoming and supportive and Alex from Claire House is always there if we need anything.”

In 2023, Therapeutic Support Worker, Alex, who works as part of the hospice Family Support Team, started running regular golf days and it has already grown to a group of 20 parents and grandparents.

Alex says: “The golf days have allowed us to offer a safe and enjoyable environment for parents to get together, have a bit of fun playing golf, while also sharing stories and their experiences with each other.

“Knowing that they’re ‘not alone’ makes a huge difference.

“Most of the parents who come say they don’t usually have the time to play golf but will make time to come to the

Claire House Golf Days,” continues Alex. “They get to see familiar faces who will understand circumstances at home and know how tough it can be.”

Speaking from the group, dad Mike says:“The golf days help me by getting me out for a stress-free day and are a great way to meet new people who have been through similar times. It’s always an amazing day.”

Dad Dave says: “Having an environment where you can share your own experience whilst playing golf with others is very therapeutic and stress busting (as long as you play well!). For me, golf is a great distraction and I always feel uplifted afterwards.”

Alex and the team are hoping to continue growing the group. It is because of your support that Claire House are always here to support local parents going through the toughest of times.

“The golf days have allowed us to offer a safe and enjoyable environment for parents to get together.”

a magical connection

Mum Charlotte shares how Claire House saw her and her husband Alex through the darkest of times when their son Finley died.

“Our son Finley arrived into the world in November 2021. Born at 23 weeks, he was fighting for his life from the moment he was born.

At eight minutes old his heart still wasn’t beating. We were told we were losing him, and I was encouraged to speak to him. As I did his heart started again, and it felt like a magical connection had been formed between us outside of my womb.

Finley was then whisked away to intensive care, and our neonatal rollercoaster of a journey began. Staying on the maternity ward was a painful reminder of how different our journey of parenthood was compared to other parents enjoying their newborn cuddles.

Paula and Kat from Claire House came to see us. I struggle to remember our first conversation, at the time I was still in disbelief that my baby was no longer dancing around inside me. They visited us regularly over the following weeks and months, and we always appreciated their friendly and gentle approach.

Finley took a turn for the worse and palliative care was suggested as the next step for him. After my husband Alex, Paula was the next person I called. She was so supportive.

Kat was there for us all throughout Finley’s final moments and also arranged for a photographer to take some photos. We are incredibly grateful to Claire House, for supporting us and Finley and helping us to make memories together as a family.

Finley’s big brother Jasper was able to stay with us after Finley died and had full access to all the wonderful facilities in the hospice. He loved the art room and the

“Connecting with others at the Butterfly Babies Group has helped me to feel less alone.”

playground. He loved playing with all the toys and the staff were wonderful with him. During the hardest time of our lives, we still needed to look after Jasper and Claire House made that so much easier.

We attended our first ‘Butterfly’ parental bereavement group just two weeks after Finley’s funeral. As I sat there the tears started to fall and I struggled to find the words to tell our story. The unspoken understanding between us all was one of our few comforts and still is today.

Losing Finley created overwhelming emotions alongside crippling isolation from some close to us who were sadly unable to acknowledge or understand the lasting significance of our loss. Connecting with others at the Butterfly Group has helped me to feel less alone. The first Tuesday of each month became our Finley day, a day for my husband and I to share our feelings.

We have made lasting friendships with other bereaved parents we’ve met at the Butterfly Group. Being on maternity leave without a living baby is incredibly hard, and meeting up with others in a similar position has enabled me to get through the early months, particularly once my husband returned to work.

Finley with mum Charlotte and dad Alex

Lynsay, one of the mums I’ve met through the Butterfly Babies Group also has an older child, Jacob. Watching Jasper and Jacob play together has been lovely. Even at their young age, I think they find comfort in knowing they are not the only ones to have little brothers who have died. After one of our play dates, Jasper said, “Mummy, you and Lynsay were talking together, me and Jacob were playing together and somewhere Finley’s and Noah’s cots are next to each other too”.

Claire House also arrange regular wellbeing days for bereaved mums with yoga and sound healing. Attending these sessions with the focus on healing together on our grief journey was very comforting to me. I’ve also benefitted

hugely from treatments with the therapies team, reflexology has kept me grounded and balanced, giving me some much needed ‘me’ time where I can relax and switch off fully.

Losing Finley has broken my heart and I can’t imagine how we could have got through the last year without the care and support from Claire House. We are so grateful for all the work they do.”

Jasper and Finley

more than just

The hydrotherapy pool at Claire House means the babies, children and young people we support get to experience more than physical relief.

The Claire House Physiotherapy team offer a wide range of therapies to support the babies, children and young people we care for in the hospice, including hydrotherapy.

Thanks to the warm water within our hydrotherapy pool, a session can have a range of physical benefits including improving circulation, relaxing muscles and pain relief. This can aid with maintaining muscle strength to help with movement outside of the pool for some of the children and young people we support.

However, the benefits of hydrotherapy go above and beyond supporting the children and young people physically. Whilst in the water, they are able to move more freely than would otherwise be possible. With floats, toys and colourful sensory lights, some of the children and young people we support can often be found kicking and splashing around in the pool, with physio sessions turning into splash-filled fun and games.

For many of the children and young people at Claire House, the facilities at public swimming pools are unsuitable. To make sure they don’t miss out on the fun we also hold ‘Family Splash’ sessions, where the whole family can come in for a fun dip and make special memories together!

a swim

Thea enjoying a swim with Ami and Laura from the Physiotherapy team

The biggest smile

Mum Joanne explains how Claire House always brings a smile to daughter Faye’s face, while providing much-needed support for the whole family.

“Seeing my smiley girl Faye giggling away at Claire House Children’s Hospice, I know just how much she loves her time there.

But as the young mum whose baby wasn’t smiling or meeting her milestones at her sixweek-check, I never would have pictured these happy moments.

I was only 20 when I had Faye and, while everything had seemed fine during my pregnancy, she was born with a rash all over her body, a low birth weight and a small head.

Initially, the doctors thought she had an infection, so she was given antibiotics in the special care baby unit and later sent home.

When we went for her check at the Liverpool Women’s Hospital, the consultant confirmed she wasn’t fixing and following, smiling or doing any of the things she should have been at six-weeks-old.

An MRI scan confirmed she had brain damage due to a worrying infection and there was no cure for it. I was devastated.

They diagnosed it as Cytomegalovirus, a common virus that can cause serious problems during pregnancy, which I may have unknowingly contracted while working in a nursery.

The doctor said what happened to Faye was the same chances as winning the lottery. And I just remember thinking, it’s not a great lottery to win is it?

Heartbreakingly, we could have lost Faye before she was born – it was a lot to take in as a first-time mum. She’s severely disabled with cerebral palsy, she was born deaf, and her vision is impaired.

I couldn’t imagine my life without Faye, and we love her to bits, but every day is hard.

Faye with mum Joanne and sister Amie

That’s where Claire House plays a massive part in our lives. It lets me completely switch off and take a breath. They’re like real-life angels. Faye is completely dependent on people 24/7 for every aspect of her care. For me, it’s doing the same thing over and over and, with the lack of sleep, it’s been like caring for a newborn for 19 years.

“She knows when we pull up at Claire House and she has the biggest smile on her face.”

Having a disabled child took its toll on my relationship with Faye’s dad and we separated when she was two.

I was a single mum until I got with my partner Jay when Faye was five and we have our daughter Amie, now 11.

Faye’s dad plays a part in Faye’s life, and my partner is great too, but I can’t just ask friends to watch Faye because she has

Faye with mum Joanne, sister Amie and stepdad Jay at the Everton visit to Claire House

epilepsy and complex health needs so they can’t look after her.

When Faye comes to Claire House, it’s like a big weight has lifted. I know she’s going to be looked after and I don’t have to worry if she’s having her medicines on time.

Faye absolutely loves it. She gets to spend time with other people, which is exactly what she should be doing as a young adult.

She knows when we pull up at Claire House and she has the biggest smile on her face. There’s so much for Faye to enjoy. She loves the hydrotherapy pool, music therapy, arts and crafts, movie nights, and being pushed in the wheelchair.

She comes home with lovely photos, and you can see how happy she is there by the big smile on her face.

As a family, we’ve made memories together at the Everton Football Club visit and Christmas parties.

I honestly don’t know what I’d do without Claire House. It gives us that freedom to do things, like having mum and daughter

time with my younger daughter and taking her to Disneyland.

We take Faye on holiday too, but it’s not a break because I’m still looking after all her care needs and it’s stressful getting on the plane.

I worry about Faye, so it’s reassuring knowing there are other people like us at Claire House and we’ve had that support for the past five years.

For Amie, it’s normal life. She’s like the bigger sister that Faye should have been. She doesn’t know any different, but it can be odd when she sees people staring at Faye when we’re out.

So, Amie really enjoys the sibling events, even going away for a couple of nights, and she’s made friends.

Obviously, when Faye was diagnosed, it was a very sad time. She never met her baby milestones like rolling, taking her first steps or talking, and I was always waiting for it to happen, although I knew it wasn’t going to. But, thanks to Claire House, she’s just so happy and we get to see her smiling and laughing.”

Faye with mum Joanne

CLAIRE HOUSE NEWS

Second time lucky

Claire House lottery player Laura found herself winning a huge £4,000 after only playing for just two months.

Laura said: “I couldn’t believe it! Having only been playing since August, it just never crossed my mind I would win. I was only playing to support a fantastic local charity, so to win the prize was a huge bonus!”

When asked what her plans were for the winnings, Laura said: “I’ve never won anything like this before, so I’m planning carefully. I think we’ll be planning the trip of a lifetime to New York or San Francisco.”

Find out how you can play the lottery by visiting www.lottery.clairehouse.org.uk

Delamere trails

Claire House fundraisers and staff donned their trainers for a new 10K, half marathon or marathon in Delamere Forest.

Runners joined in the fun in the forest to do their bit for charity and raised almost £2,000 for the children’s hospice.

Wearing new hospice running tops, 10 Claire House staff took part, with CEO David Pastor coming first in the 10k.

There were three distances to choose from. Two other groups, including one from a Claire House family, completed the Delamere half or full marathons.

Claire House will be the charity of the year for the 2024 Delamere Trails run.

You could be pounding the forest floor during this year’s Delamere trails races. To sign up go to: www.clairehouse.org.uk/events

In memory of Archie and Elliott

Thank you to Carol and Norman PlumptonWalsh, from Runcorn, who have raised an incredible £38,072.64 for both Claire House and the Liverpool Women’s Hospital, in memory of their twins Archie and Elliott who sadly passed away in 2021.

For the past two years, the family and their friends have been doing loads of different fundraising, from organising sponsored walks to trance nights and gala dinners.

Carol said: “The staff at both Liverpool Women’s Hospital and Claire House gave our boys lots of love, care and dignity and have supported me and my husband during the most difficult time in our lives.”

Holly’s bake sale

Young fundraiser Holly organised a bake sale at home to raise vital funds for Claire House Children’s Hospice.

The eight-year-old wanted to help her local children’s hospice as part of her charities badge at Brownies. In total, she raised a fantastic £343.60 to help seriously and terminally ill children make the most of the time they have.

Holly said: “I chose Claire House because I think it’s the best local hospice that helps children and families. As a child myself, I wanted to help other children.

“The best thing about fundraising was meeting all the people that came to my cake sale and raising money for Claire House.”

A spooktastic abseil

Over 70 adults and children abseiled the historic Leasowe Lighthouse to raise thousands of pounds for Claire House in October.

For the Halloween abseil, brave participants – some wearing fancy dress – climbed dizzying heights of 101ft before making their descent and raising £18,690.

This included more than £8,000 raised by an adventurous team from Starbucks/Soul Coffee. Claire House staff members Pamela Foulds, who has just turned 78, and Beth Schofield - along with her daughter - also completed the abseil.

The two-day Halloween event was such a success, it’s set to be an annual highlight in the Claire House calendar.

Supporters will be able to take in the stunning views across the Wirral Estuary, and tick something off their bucket list on 26 October 2024.

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Registered Charity No. 1004058 Company No. 02620240