Our House Spring 2023

OUR HOUSE

in safe hands

Because of you we are here to offer support and reassurance to families like Tymon’s

Editor: Jessica Arnell jessica.arnell@clairehouse.org.uk

Contributors: Hannah Shannon, Harriet Belderbos, Mark Pearson, Mark Hobley

Photography: Jump-Imaging C.I.C

Design: coppermedia.co.uk

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

Registered Charity no: 1004058 Company no: 02620240

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.

WELCOME TO OUR HOUSE

Hi everyone, I’m Maggie and I’d like to welcome you to the Spring 2023 edition of Our House magazine.

INSIDE THIS ISSUE

4 ALWAYS HERE Meet Nurses Jess and Becky who offer the very best care to seriously ill children and their families at any time of the day and night, wherever they are needed.

6 IN SAFE HANDS

Hear from mum Maggie who explains how the hospice team are supporting her and her son Tymon at home.

10 THERE FOR EACH OTHER

Read how our Butterfly Babies group supports parents bereaved through baby loss.

This issue, it’s me and my son Tymon on the front cover. Tymon loves spending time with the hospice team, they help keep him well and out of hospital by supporting us at home. They also give me a much-needed break.

There has been lots going on at Claire House 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 I would like to say a big thank you.

I hope you enjoy reading this issue of Our House.

Love Maggie

12 SHARING STORIES OF MY BOYS MAKES ME FEEL BETTER

Grieving mum Carol talks about the difference the support of Claire House made when she lost her twin baby boys, Archie and Elliott.

16 PLAYING FOR FUN, MEMORIES AND REASSURANCE

Hear how community Play Specialist Kerry is on hand to create ever-lasting memories and fun.

20 OUR HOUSE NEWS

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

always here

Palliative Care Nurses Jess and Becky are here for seriously ill children and their families, offering the very best care at any time of the day and night, wherever they are needed.

As part of the Rapid Response team, Jess and Becky bring all of the services of the hospice into the family home or hospital ward.

“No one day is the same. We are on call all the time, providing emergency or end-of-life care.

“Our daily jobs include being in contact with families and visiting children to manage their symptoms. If a child struggles with pain, we may introduce new medicine. We aim to keep children out of the hospital where we can.

“We support children with palliative care needs, making sure however long or short their precious lives are, life is as good as it can be,” said Becky.

“Some of our most important work is at the end of the phone, when a parent needs advice and a reassuring voice.

“We work as part of a multi-disciplinary team which includes consultants, physiotherapists and nurses. This means we can manage any symptoms at home and avoid hospital admission wherever possible,” Becky continued.

When a child or young person does have to spend time in hospital, Jess and Becky are there too.

Jess said: “We often sit with the child for a few hours to give parents a little break from the ward, whether it be to get a meal, take a shower or pop home.

“We also work with other teams at Claire House, for example, organising a complementary therapy session for a mum to help her relax, or visiting a child with our play specialist to make special memories.

“At the end of a child’s life, sometimes it is the simplest things that are most important – walking in the garden or watching a movie as a family.

“We had a child who transferred to Claire House from hospital and when they came out of the ambulance, mum said it was the first time that he had ever felt rain on his face,” said Jess.

Becky finishes: “It’s a privilege making a difference to children and their families at some of the most difficult times.

“Thanks to you we can continue to be here for families wherever and whenever they need us.”

“It’s a privilege making a difference to children and their families at some of the most difficult times.”

in safe hands

For mum Maggie keeping her son

Tymon well and out of hospital is a challenge. Here she explains how the hospice team are supporting her and helping to keep Tymon safe at home.

Tymon is a happy, smiley 10-year-old who is full of personality. He loves his soft toys and sensory lights, and Paw Patrol is his absolute favourite programme.

Tymon was born with a genetic condition which means he has complex medical needs, including chronic lung disease, a heart condition and developmental problems. He is unable to walk or talk and is fed through a tube into his tummy.

“We spent a lot of time in hospital during the first few years of Tymon’s life; it became our home. Tymon was really unstable and we had very difficult conversations with doctors because he did not make much progress.

“It was emotionally draining, but Tymon defied the odds. He’s a little mystery,” said Maggie.

“We now spend more time at home and keeping Tymon happy and well is my main priority. Even a small infection or minor illness can mean he ends up in hospital on the intensive care unit, which is very scary.

“When we were able to come home from the hospital I did not want anyone around me. I was too scared, I did not want to pick up any infection and then the pandemic started, so we didn’t leave the house for over a year.”

“Tymon is bigger and stronger now, but we still don’t have many visitors. I try to avoid public places and Tymon does not go to school, instead he has an iPad session once a week.

“Claire House was mentioned to us when Tymon was younger, but in the last two years they’ve become a huge support.”

hands

Maggie was introduced to Alice and Amy from the Claire House planned care team, who were able to offer monthly respite sessions at home.

“Tymon is very sociable. He likes to have people around, especially Alice from Claire House. He loves it when she comes to visit,” said Maggie.

Alice explained: “We have started by supporting Tymon and his family at home. We start each session by having a good chat about how he has been since the last time we saw him. We then let Tymon lead us on what he wants to do. At the moment he loves sensory stories, so I’ll read with him and play whilst mum can relax and do any jobs she wants to.”

For Maggie, who had never left her son with anyone before, building the relationship with the staff at Claire House has been life changing.

“I’ve got no other family here, it is just me and my husband who know how to look after Tymon, which was worrying for me, because if we were to need some extra help, we would have no one.

“We now have Alice. She knows Tymon and understands all of his medical equipment, feeds and medication,” said Maggie.

“We put together a care plan for Tymon. This included all of his medical information, but also his likes and dislikes. Anyone could read it and find out everything they need to know about Tymon and the care he needs, and it helps to give parents like Maggie peace of mind,” said Alice.

“Knowing we have Alice and Claire House makes me feel safe, I feel much better mentally now,” shared Maggie.

“But Claire House don’t just help with planned sessions. I know they are always on the end of the phone if I ever need them. Alice put us in touch with the physiotherapy team at the hospice, who have been to visit to offer advice and support.”

As the relationship and confidence grows, the hope is that Tymon will one day be able to spend time in the hospice.

“I am on the right path; I feel calmer because I trust Tymon is in safe hands. They know how complex Tymon’s needs are and how to look after him. Most importantly, I know Tymon loves spending time with them,” said Maggie.

“knowing we have Alice and Claire House makes me feel safe, I feel much better mentally now.”

there for each other

Kat and Paula from the perinatal team at Claire House explain how our Butterfly Babies group supports parents bereaved through baby loss.

Butterfly Babies is a group for mums and dads bereaved through baby loss. The group allows parents going through similar things to support and talk to each other.

Alice, who lost her twins Zara and Matilda and attends the group, said: “It is a nice, safe space to meet people who are in a similar situation to us. I have made friends and even though it’s a sad situation, it has brought us together.

“It’s nice that something comforting can come out of something so sad. I am so glad I decided to go to the first morning. I was nervous but left feeling supported and listened to.”

Kat and Paula are part of the perinatal team at Claire House who provide vital support to new and expectant parents.

Kat said: “We set up the group four years ago. It started as a coffee morning for mums but as the group went on it became very clear that a lot of dads wanted to be involved too.

“It was a very therapeutic group from session one, and we quickly sought assistance from the counselling team to co-facilitate. The group meet monthly and in this protected environment can talk, listen and share their stories.”

Charlotte, who started going to the group after she lost her son Finley, said: “We attended our first 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.”

“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.”

It is because of you that we can be here for parents like Alice and Charlotte, thank you.

of my boys makes me feel better

“I really like talking about my boys, Archie and Elliott, and if by sharing their story I can make a difference to other families and raise money for those who looked after them, then that makes me feel better.

From the minute I found out I was having identical twins I knew I was having boys. I thought because my husband Norman is naughty, I was going to have two naughty Normans.

I had no idea of the risks of having identical twins. After seeing a specialist at the Liverpool Women’s Hospital, we found out the boys had twin to twin transfusion syndrome. That is when twins share the same placenta, their blood vessels are connected and the blood flows from one twin to another.

Archie was the donor twin and Elliott was the recipient. This meant Archie didn’t get enough blood and nutrients, and Elliott got too much.

From then on, I was monitored weekly because if one twin passed away, the other twin would pass away shortly after.

When I got to 24 weeks they performed laser surgery to disconnect the twins’ blood vessels.

The surgery was successful but because Archie was so small, he was too weak to survive. He was scanned an hour after the surgery and it was found that he’d passed away.

A few days later my waters broke. Elliott was born at 26 weeks. He was 2lb 1oz.

Grieving mum Carol talks about the difference the support of Claire House made when she lost her twin baby boys, Archie and Elliott. Sharing stories

Carol and Elliott

When he came out, he was breathing on his own but he ended up on a ventilator quite quickly.

That is where I first met Kat and Paula from Claire House. In hospital it was so intense. It’s just so good that the hospice team were there to support us and provide other people to talk to. They also made me necklaces from Elliott’s hand and footprints that I have round my neck today.

Elliott made steady progress. He liked his little cuddles, loved his food and never had a problem with his bottle. Elliott

having footprint mementoes made

Carol (right) and Norman (left) at their fundraising event

We prepared to bring him home. We set up his room and got everything ready but then he started deteriorating again and within a week he was back on a ventilator.

On 17th September at five months old, Elliott passed away. I could have brought him to Claire House but it felt like the hospital was Elliott’s home and it was right to keep him there.

Paula came in and helped us bath him, change him and get things for his little memory box.

Norman and I started counselling and we joined the Claire House Butterfly Babies bereavement group. It helps being around people who understand what we’ve been

through. Friends and family try but sometimes I don’t think they know how to deal with it or how to react.

I’ve also had reflexology which helped me relax and have time to chill. I’ve come to laughter yoga at the hospice, which I think is brilliant because they can quite easily make me laugh.

I first thought about fundraising when I turned 40. I didn’t feel up to a party but I wanted to mark my birthday. So, I thought, why don’t I use my 40th year to raise £40,000?

There was a fishing competition, then a family funday and we’ve had a football match and a walk from the Women’s Hospital via Claire House to Runcorn. We’ve done a curry night and a darts match and have lots more planned, including a rave!

At the end of my year of fundraising I want to have a big celebration. It’s my way to say thank you to all those who looked after my little boys, tell stories about them and continue to be there for me and my husband.

“It’s just so good that the hospice team were there to support us and provide other people to talk to.”

Playing for fun, memories and reassurance

Whether it is supporting a family in hospital, preparing a child for a daunting operation or bringing the beach to the intensive care unit, community Play Specialist Kerry is on hand to create ever-lasting memories and fun.

“Being a Play Specialist at Claire House means I’m here to support babies, children, young people and their families wherever they might need me. It could be at home, in school, at the hospice or in hospital.

“For a lot of the children that the hospice supports, their whole life is structured around appointments, procedures and medicines, so quite often they need someone to have fun with.”

Eight-year-old Sayuri was diagnosed with a brain tumour at 16 months old and has been supported by the hospice ever since.

Her condition means she has had many operations and treatments.

During the pandemic, Sayuri was very unwell in hospital following an operation. Visitors weren’t allowed, but as a member of the hospice team, Kerry was able to visit.

“Sayuri was very poorly and although she wasn’t up to playing, I was just able to sit with her, massage her feet and help her to relax,” said Kerry.

For Sayuri, her sessions with Kerry are a chance to have fun and build confidence.

She enjoys imaginative play, whether she is running a café or playing school. She has a huge collection of teddies who get involved too.

“I play with all my toys with Kerry. I get to do lots of fun things.

“We play board games and do treasure hunts. Once I was really brave and held a giant snake and I’ve met Olaf the Snowman and all of my favourite Disney Princesses,” said Sayuri.

Kerry uses play to prepare children for treatment, distract them during a procedure, and help them understand what they have experienced.

“It can be very scary going to appointments and sometimes children just need someone to be their voice. In hospital they aren’t always asked how they feel or what their wishes are, so I help them to do that.

“We prepare for appointments by having fun making little booklets which have lists of all of their wishes.

“It means they can say they want to use a mask or they really like to wear their fluffy socks when they go to theatre. It actually gives the child a voice and helps to ease their anxieties.”

Kerry also supports families when their child is at the end of their life, helping them to create mementos and charms.

“When a family is having a really tough time, I help them put that to one side for just an hour and plan a nice activity for them, so they’ve got some lovely memories.

“For some families they might have something they would really like to do with their child. It doesn’t matter how big or small it seems, we try and make it happen no matter what.

“We were supporting a little boy called Charlie and his mum and dad’s one wish was to take him to the beach. They wanted him to hear the waves and feel the sand. He was in hospital on intensive care so he was just too poorly to take him; instead we took the beach to them.

“We had a tray full of sand. We put wave music on in the background, had water to splash in and had toy seagulls hanging around his bed. We got sunglasses for all

the family members to wear so we could take photographs like they were at the beach and it was just beautiful.

“Mum said all she wanted was for her little boy to feel the sand between his toes and we were able to make that happen.

“It’s a tough job sometimes, but it’s lovely to be able to help a family create lasting memories. It makes it all worthwhile when I see the hand and footprints upon a parent’s wall after the child has died or they say, ‘we were at a really low point and you gave us half an hour to enjoy just spending time together’.”

“It can be very scary going to appointments and sometimes children just need someone to be their voice.”

CLAIRE HOUSE NEWS

Remembering Luke

In memory of her son Luke, Claire House mum Christine has raised thousands of pounds by organising bingo events at the pub she runs.

The benefits of volunteering

Kerry, who volunteers in the Claire House Hunts Cross shop, has seen the benefits of giving a little bit of time to a good cause.

“When I first started, I had some issues with my health, I was feeling really low and I didn’t talk much. Volunteering was a good way to keep me moving.

Having fundraised for Claire House in various ways since 2006, the bingo events at The Sandbank pub in Wallasey are Christine’s latest efforts to raise money. Now in their second year, including live music and entertainment, they have proven a hit. At three weeks old, Luke became seriously ill with a rare condition, listeria meningitis. Luke and his family received support from the hospice throughout his life before he passed away aged 15 in 2019.

“Luke was such a lovely happy boy and Claire House were amazing with him. They provided support for all of us.

“We’ve got more fundraising nights booked in and are going to continue fundraising as much as we can,” said Christine.

“It’s been a year now and it’s helped massively. I’m more confident, I feel happier and I’m nearly three stone lighter!

“I’m a single mum of five and know how it feels when your child is sick. That’s why I chose Claire House. It’s good knowing that I’m giving back.”

Just one hour of volunteering for Claire House can make a big difference to seriously ill children in your local area. For more information and to get involved visit clairehouse.org.uk/volunteer.

Furry Friends

Nanny Sharon’s Alpaca Farm, Prenton, and their four-legged friends have become popular visitors to Claire House.

The founder of the Alpaca Farm, Ben, has worked alongside counsellors and specialists in speech and language therapy believing that animals can bring a sense of calmness and help children open up in a relaxed environment.

Eurovision excitement

With Eurovision 2023 being held in Liverpool, Claire House was excited to feature on the BBC Handover and Allocation Draw show in January. Charities and communities across Merseyside featured as part of the show, with hospice staff and two very special young people, Noah Cunningham and Codie Ann Gibney who are both supported by the hospice, having star roles.

Along with organisations from across the city, Noah, Codie and Claire House staff collectively read a few lines of a poem written by Frank Cottrell-Boyce.

Mia’s amazing fundraising

Mia, aged 10, raised a total of £1,600 over the Christmas period for Claire House.

Rosie from the play team who organises these visits said: “This is a great opportunity for the children and staff to meet the alpacas, guinea pigs, rabbits and miniature goats.

“The children are encouraged to feed the animals so that’s the sensory part and the stretching of their arms is the physio part.

“It’s fun and therapeutic because the animals are well behaved and can be trusted.”

“Thank you for the invitation to take part in such a memorable occasion, we had fun recording for Eurovision, even if we did have to say ‘you’ll never walk alone’. What a privilege to be asked to be a part of a big event,” said Everton fan Noah.

On Saturday 26th November, Mia set up a stall in her local Tesco store which was full of decorations she had made. Customers were able to make donations in exchange for Mia’s decorations. Mia started fundraising in 2020, making tie-dye t-shirts. Her hard work has continued as she went on to become a Claire House Advisor, helping our fundraising team to make important decisions about new events, resources and ideas.

“I support Claire House because fundraising is a way of helping the children and families who are cared for and supported by the hospice, anyone can help make a difference,” said Mia.

thank you for your support

thank you for your support

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Claire House would like to contact you about fundraising, future events and how your support makes a di erence. You can opt out at any point by contacting us on 0151 343 0883 or at giving@clairehouse.org.uk. For more information on how we use your data, please refer to the Privacy Notice on our website.