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our house CLAIRE HOUSE AUTUMN MAGAZINE 2021

FRIENDS FOR LIFE Because of you we are there for the siblings of the children that we care for, like Caitlin and Emily.

WELCOME TO OUR HOUSE Hi everyone, my name is Fin and I’d like to welcome you to the Autumn 2021 edition of Our House magazine. I was introduced to Claire House when my brother Elliot passed away in 2011, since then the family support team have been there for me. I love going on trips with Claire House. I have the opportunity to be surrounded by siblings who have been through similar experiences to me. The trips I’ve been on were filled with fun and laughter. I’ve made and continue to make countless memories with friends, staff, volunteers and other siblings. In this edition, you will learn about the impact that Claire House has on the siblings of poorly children or the siblings of children who have sadly passed away. On the cover are my friends Caitlin and Emily, who along with more of my friends will each tell you about the impact Claire House has had and why it is so important to us. I would like to say a big thank you because without your help I wouldn’t have made the friends, memories or received the support that I needed.

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. A special thanks to BBC Children in Need who kindly fund our sibling events programme.

I hope you enjoy reading this issue of Our House and hearing all about what has been happening in and around the hospice. Love

Fin Editor: Jessica Arnell jessica.arnell@clairehouse.org.uk Contributors: Hannah Shannon Photography: Zut Media, Fotopia, Jump-Imaging C.I.C Design: coppermedia.co.uk Claire House Children’s Hospice, Clatterbridge Road, Bebington, CH63 4JD 0151 343 0883 www.clairehouse.org.uk Registered Charity no: 1004058 Company no: 02620240

CONTENTS 4

SIDE BY SIDE OR MILES APART, TOGETHER WE ARE SISTERS CONNECTED BY THE HEART

Hear from Tracey, whose sister Claire was the inspiration behind Claire House. She is truly thankful that the hospice supports the whole family.

A CHILD AT HEART

Therapeutic support worker, Alex Wheeler explains how thanks to your support and funding from Children in Need, his work makes a massive difference.

A SPECIAL PLACE

Hear about how much the hospice means to Jasmin. She’s been supported by Claire House since her sister Abigail passed away.

SUPER SIBLINGS

See some of the amazing things the siblings of the children we care for have been doing to raise funds for families like theirs.

HELPING EACH OTHER THROUGH

Learn how teenagers, Fin, Ben, Caitlin, Emily and Alisha have created friendships and fantastic memories through sibling support groups offered at Claire House.

I JUST WANT TO GIVE SOMETHING BACK

Wyley shares why he has become a Claire House Advisor.

OUR HOUSE NEWS

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

Side By Side Or Miles Apart, We Are Sisters Connected By The Heart Tracey’s sister Claire was the inspiration behind Claire House. Here Tracey explains how she is truly thankful that Claire House is there to support the whole family.

Claire and I were just like any other siblings, loving one minute, arguing the next. With only two years between us we were always together. We were a happy family, my dad a builder and my mum a nurse. We enjoyed holidays to Butlins and meeting up with family friends. Then on one of those holidays Claire began to complain of terrible headaches. We could never have imagined that this would be the beginning of something that would change all our lives forever. Claire was diagnosed with a malignant tumour behind her nose, this was devastating news for our family. She began treatment and our lives became very different.

By then, my younger siblings Jenny and Kevin had been born but our family was often torn apart as my parents stayed with Claire in hospital and tried to keep things as normal as they could for us at home.

We fundraised tirelessly for years, our house always full of Claire House merchandise, sweatshirts and mugs. The support we received was overwhelming, as everyone seemed to be raising money for Claire House.

However, I missed my sister, I missed my mum and dad and I missed our family time. At school I struggled to stay focussed and was often caught daydreaming out of the window. It was difficult to visit Claire in hospital and I remember often wanting to stay longer but it just wasn’t possible.

Then finally in 1998, ten years after Claire’s diagnosis, and after many years of planning, committee meetings, fundraising events and location hunting, Claire House Children’s Hospice opened its doors, complete with a bronze plaque designed by myself, Jenny and Kevin.

Sadly, Claire’s treatment didn’t work, and she died in hospital at just nine years old. Our whole family was devastated. I remember feeling very angry for a long time, life can be so cruel. My parents and their friends decided that there should be a place where families can be together during tough times and the idea of Claire House Children’s Hospice began.

Tracey (left) and Claire (right)

I felt relief. I get great comfort knowing that families like ours have a choice and that Claire House will be there for them. With the support of the hospice, brothers and sisters can spend time with their poorly siblings, having fun and making memories. They can splash together in the hydrotherapy pool, watch movies in the quiet lounge or get messy in the art room, something which just wasn’t possible for our family.

Tracey (left) and Claire (right)

I get great comfort knowing that families like ours have a choice and that Claire House will be there for them. The team at Claire House are there for the brothers and sisters of the children the hospice cares for and can help them understand their feelings and talk to them about their emotions. When Claire House Children’s Hospice opened in December 1998 the hospice was looking after 10 families. Now, thanks to your support, Claire House can be there for over 400 children and their families. In 2019, our family and friends set ourselves the goal of raising £40,000 in Claire’s memory during her 40th birthday year.

local children and families to enjoy music; both in the hospice and out in the community. We were so pleased to reach our goal and it was such a fitting tribute to Claire on her 40th birthday. This year, I took part in the Liverpool Cathedral Abseil on Claire’s 42nd birthday to raise more funds for the hospice. Thanks to supporters like you, the hospice team can continue to be there for the whole family, when life couldn’t get any tougher and for that I am truly thankful.

Claire’s 40 for 40 appeal was set up to fund a year-long music and care package, to enable

A CHILD AT HEART Brothers and sisters of children who come to the hospice can have a tough time. Alex Wheeler, therapeutic support worker, explains how thanks to funding from Children in Need and your support, his work makes a massive difference. I organise the sibling events. These can be anything from a visit to the cinema, a bake off or even an outdoor adventure for a night or two. My favourite was a sleepover at the National History Museum. Nine of us travelled to London together, where we joined everyone in the museum after tea, did activities all evening, then slept under the Diplodocus in the centre of the museum. I also like the Easter Egg hunts for the younger kids, as the sun always seems to shine. The most unusual event was probably spending the night in an old World War II bunker. It was fantastic but also quite strange. For the siblings, life can be hard. Sometimes they can feel a bit neglected as mum and dad’s attention is focused on their poorly brother or sister. They can also grow up quickly as they see it as their responsibility to help out. Whether they are living with a brother or sister who has a life-limiting condition, or are sadly bereaved, the key thing for siblings is to get together. We do activities in groups from six to 20. The friendships the children make together can last a lifetime. One of the boys summed

things up at a sibling event recently when he said, “I didn’t have any friends before I came here, now I have five” and he pointed round the room. You can tell they feel 100% more relaxed chatting to one another, as they know they’ve been through similar things. I have worked at the hospice for nine years. I think I’m a bit of a child at heart, but I was also always drawn to the siblings when they came and stayed. I’d think “you are here and you don’t know what is happening, it must be tough”. Particularly if their brother or sister was here for end of life care, I wanted to make their experience better at a horrible time. If you build a child’s trust early, they will know they’ve got someone when times get tough, and that can be useful if your brother or sister might be coming to the hospice for many years. I think the best thing we can do is let them know that they are not alone and that there is support out there. During the pandemic it’s been tough as we could only do activities by Zoom, but things have got going again. We’ve just done a Mad Science event and have a Chocolate Factory one planned, which sounds pretty good to me!

HELPING EACH OTHER THROUGH

Meet teenagers Caitlin, Emily, Ben, Alisha and Fin who have been supported by the hospice for many years. Through the sibling support groups offered at Claire House, they have been able to create friendships, bonds and memories.

“My name is Fin, I’m 15-years-old and I was first introduced to Claire House immediately after my brother Elliot had sadly passed away at the age of nine. I was only little, but I remember being told that I wasn’t going to see him again and that the angels had taken him to heaven. “Claire House supported me through a very difficult time, they took me on trips to places such as Cheshire Adventure Farm Trust and Colomendy in Wales. During these amazing trips I made lifelong friends,” said Fin. 17-year-old Alisha and her family were supported by the hospice, before her twin brother Luke passed away and are still supported by the hospice today. “My Claire House experience has been one of the most amazing experiences of my life and always will be. From a young age I’ve been supported by Claire House in many different ways and can’t repay what the hospice has done for me,” says Alisha. Our family support team are there for the brothers and sisters of the children we support, when life feels too hard. The team give time and attention to siblings through

Fin and Ben in 2014

group and one to one counselling, as well as dedicated activities and groups. Ben’s sister Libby sadly passed away when he was just five-years-old, but the Claire House team were there to listen, support and encourage Ben to talk about how he was feeling. “Support workers like Alex are very good at listening and are very easy to talk to. They are paternal figures as well as friends, you can speak to them about anything and have a good laugh too,” says Ben. “The family support team have been there for me, whether I’m crying or letting things out in anger, to me smiling and laughing whenever I’m around them. I know they are always there for me when I need them,” says Alisha. At Claire House, we know that the siblings we support can have lots of different experiences in their family, and often these are not the same as those of their friends from school or groups.

Alisha

We put children like Fin, Alisha and Ben in touch with other siblings who may have been through similar experiences to them.

“It was really beneficial to speak to people who aren’t my parents.” “The Claire House sibling group helped me so much, as there were other people my age, with similar experiences, but never the same. “I can talk openly with them, especially Fin, who would always just understand. It was really beneficial to speak to people who aren’t my parents, it was like a weight had been lifted off my shoulders,” explains Ben. “I found that it was difficult to talk to my school friends as they would struggle to understand but it was even harder to talk to my family about my feelings, because I didn’t want to upset them. “This is why the friends I made at Claire House are very important to me. The majority of the friends I’ve made at Claire House had been

through similar and daunting experiences, making it a lot easier for me to open up about my feelings. They just understand. We can openly discuss how we feel and although we’ve had difficult times, we’ve helped one another get through them,” said Fin. For Caitlin and Alisha, the sibling groups and activities have meant they have been able to talk about their feelings and make friends for life. “The sibling events have helped me, as sometimes I don’t want to speak to adults about how I’m feeling, so having people there my own age who understand me is good. “I have found a lifelong friendship with Emily. We do a lot of things with Claire House but also a lot outside, like holidays and days out. I really want to thank Claire House from the bottom of my heart. If it wasn’t for them, I wouldn’t be the person I am today and I wouldn’t have the friends I have today,” said Caitlin “When my twin brother Luke died the others arranged to meet and they got me a special present, which they knew I would love. It was very emotional for me to have their support and for them to get me a gift. I know they are there for me whenever I need them,” says Alisha. Brothers and sisters are invited to join our planned activities, trips and residential breaks throughout the year, including go-karting, and an overnight, outdoor Bushcraft event.

Emily and Caitlin

“As a group we’ve had the funniest and the best times all thanks to Claire House. The staff who took us on these amazing trips all support us. They provided a shoulder to cry on but also a friend to laugh with. They are the most amazing people and the world is a better place for having people like them,” said Fin.

A sPECIAL PLACE Meet 10-year-old Jasmin, who wants to tell you what Claire House means to her. When Jasmin’s sister Abigail passed away last year, our staff were there to care for Jasmin and her family. Our team still support Jasmin and are there to offer a listening ear and a friendly chat if she ever needs it. She enjoys taking part in fun activities like arts and crafts and during the past year has taken part in online quizzes with other siblings who the hospice cares for. Here, Jasmin shares a poem she wrote all about Claire House:

Claire House is a special place, For families to enjoy their days, Even when some times are rough in different ways. There are lots of things to do, Like in the art room and the hydro pool, Watching films in the tipis in the family lounge is cool. The team is always happy and smiley all day long, And when the characters come they all sing a happy song.

“I JUST WANT TO GIVE SOMETHING BACK” Here, Wyley shares why he wants to become an Advisor to the hospice that supports him, his younger brother Romeo and their family. Wyley is 13-years-old and has recently become a Claire House Advisor. This means that we ask him and a group of young people, aged 3-17, to share their opinions, advice and feedback on new events, resources and projects. Our advisors recently received their first task, which asked them to give us their honest opinions on some volunteering awards for young people. They were asked to comment on the design of the document, whether they would enjoy the tasks set out and whether they think people their age would take part. By sharing their thoughts and ideas, they are helping us to create exciting opportunities for young people their age.

“I just love that at Claire House we can make memories and help my brother Romeo enjoy his life, with his heart condition.” 16

The group is made up of young people from all over our local community, but Wyley has a very special reason as to why he has chosen to get involved. “My brother Romeo has had a really hard time since he was born. He has a heart condition called Hypoplastic Left Heart Syndrome which means he needs care and support 24 hours a day. Claire House has always been there to help us as a family and I just want to give something back to them,” said Wyley. Wyley, Romeo and their mum and dad enjoy respite breaks at the hospice. These planned breaks enable families like theirs to spend time together, giving them an essential break from the responsibility of managing and providing all their child’s medical and care needs. “Claire House is like a home away from home, it’s nice to be able to get a break from our hectic lives. We can just chill and relax, and it helps us enjoy each other’s company. It also helps give us a break from each other as well, which I think is a good idea sometimes.” “I just love that at Claire House we can make memories and help my brother Romeo enjoy his life, with his heart condition. It helps him take a

if you know a yo person, aged 3- ung 17, who would like to be a claire house come advisor just like wyle y then please email fundraising@ clairehouse.or g.uk

break from hospitals and operations all the time and means he can just be a kid,” shared Wyley. “I have so many memories, thanks to the hospice. Once, on a family stay, we went to Blue Planet Aquarium and we had so much fun there with play leader, Lawren. It was totally awesome. “A couple of years ago, we took part in Children in Need for Claire House - we were

on TV and I did a live radio interview, it was so funny. But, the stays with my family at the hospice are my favourite; it’s like a little holiday for us all.” “I’ve just received my first task as a Claire House Advisor and I can’t wait to get stuck in. I am so pleased be a part of this and promise to take my role very seriously,” said Wyley.

SUPER SIBLINGS

The brothers and sisters of the children we care for at Claire House have been busy raising funds for the hospice, so we can continue to be there to support families like theirs. Thank you super siblings! LEGGING IT FOR LILY Louis, age 11, ran a marathon over seven days in memory of his younger sister Lily, who was cared for by the hospice before she sadly passed away. “I wanted to raise money for Claire House because they looked after my little sister Lily, keeping her safe and happy. I could then go out with Mum, Dad and Betsy sometimes, and we knew Lily was being taken care of,” said Louis. Louis started the marathon on Lily’s birthday and covered the 26.2 miles across the week raising over £2,000 for the hospice.

MADDISON’S CLAIRE BEAR 3K Maddison, age six, took part in the Claire Bear 3K this summer, in memory of her little brother Phoenix. Claire House were there to support Maddison’s family throughout Phoenix’s life and are still there to support them today. “As a family, we will never be able to thank Claire House enough for what they did for us, for the past three years. They have always been there, every step of the way and are always on hand if I’ve needed them, especially in Phoenix’s final days,” said mum Caz. Maddison said she wanted to take part in the Claire Bear 3K “for her baby brother, to raise money for the ladies that looked after Phoenix, when he was sleeping”. Mum Caz, said “Maddison has been through so much already in her six years that we can’t even explain how proud we are of her.”

NEW HAIR TO SUPPORT THE HOSPICE Claire House cares for Esme’s brother Robinson and to show her appreciation for the hospice, she decided to help raise vital funds by cutting her long hair short. She managed to raise a fantastic £655 and doesn’t she just suit her new look? Speaking of her fundraising, Esme said: “Claire House look after my brother so that we can go on holiday and to places where it’s difficult to go with Robinson, as well as giving my mum time to relax and just be ‘mum’. “Raising money for Claire House is important to me because I know that it will help them to carry on supporting families like mine.”

BRAVING THE CHILL Drae, age 10, and Mason, age seven, jumped in and out of a freezing cold swimming pool every day for a week to raise funds for Claire House. Their brother and step brother, Troy, is supported by the hospice, so they came up with the crazy idea, so they could give something back. “We wanted to help Claire House because they help lots of sick children and their families making memories. And they look after my brother Troy and help him get better,” said Drae. Drae and Mason raised an amazing £100.

OUR HOUSE news SAND HILL SUPERSTARS Colin Reilly and Johnny Johnstone spent nine hours running up and down sand hills in Formby to raise funds to support the hospice. The pair ran up and down one of the steepest sand dunes 500 times, raising an incredible £10,000 for Claire House. “Between us we covered the same height as Everest. It was red hot on the day, but we had trained hard and had our family and friends cheering us on. “MW Henshaw, a fantastic local company, sponsored us to help towards our fundraising and set up an arena on the finish line.

“Johnny and I are both aware of the work that Claire House does and wanted to do something to help the charity continue to do their great work.”

IT’S GOING TO BE ‘BEERLY’ GOOD

HAVING FUN IN MEMORY OF ABIGAIL

We will soon have our very own Claire House beer for supporters to purchase.

Merefield School held a fun day in memory of Abigail Lavender, one of their pupils who was cared for by Claire House and sadly passed away.

The team at Brimstage Brewery are working with some of the dads supported by the hospice to create a fruit infused beer. Claire House dads, therapeutic support worker, Alex, and fundraiser, Josh, recently toured the local brewery and tasted different beers, infused with locally picked fruit and flowers. Over the coming months they will work with the brewery to create the perfect Claire House beer. “We’re really excited to be making our very first beer with Brimstage Brewery and with the help of some of our Claire House dads. Watch this space for the Claire House beer soon,” said Claire House fundraiser, Josh Worrall.

They had a raffle, a host of exciting activities and even a splat the staff stall! One of Merefield’s staff members said: “The Fun Day really lived up to its name and was enjoyed by all! It was a great way to bring the school community together for a very important cause.” They raised an amazing £1,305.68!

GARAGE GIGS When everyone needed cheering up during lockdown, brothers, Mathew, 10, and Patrick, 14, decided they needed to do something to help make people smile and raise funds for Claire House, this is when they had the idea of a garage gig. “We fundraised during lockdown as we knew there were people who were greatly affected by Covid. We wanted to make a difference and cheer them up whilst also cheeringup Claire House,” said Patrick.

CLIMBING NEW HEIGHTS FOR CLAIRE HOUSE Millie, age nine, and Chessie, age six, decided to climb Snowdon after their Nana, Claire House volunteer Maggie, told them all about the hospice. “We climbed Snowdon because our Nana has told us a lot about the children at Claire House, so we wanted a big challenge to raise money to make them happy,” said Millie and Chessie. After setting a fundraising target of £1,000, they completed their climb and smashed their target, raising a huge £1,535 for the hospice.

“And we didn’t want Covid to stop us from spreading cheer and raising money for charity, besides, it’s great fun, and it cheered us up too,” added Mathew. The garage gigs were broadcast live on YouTube and Facebook and attracted viewers from around the world. In total the boys raised an incredible £2,500.

RAISING MONEY AT THE CAR WASH Amelie, age nine, had the great idea of running a car wash to raise money for Claire House. “I wanted to raise money for Claire House because it is a place where children and families can go when they need support and it can really help them,” Amelie said. First, she created flyers to put through her neighbour’s doors to tell everyone that it was happening. Then, she made sure to have a socially distanced waiting area and even cookies for customers to eat, whilst they waited. Amelie stayed out all day washing cars and raised a fantastic £323.17.

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