Tŷ Hafan Cwtch Autumn/Winter 2021

cwtch

newsletter autumn/winter 2021

our news and stories from tŷ hafan

thank you for being a

lifeline

inside the hospice for children in Wales yr hosbis i blant yng Nghymru

ollie's story p.6

your support p.9

the big give p.10

cwtch

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

welcome It’s amazing to think that Cwtch magazine has been going since 2009.

It’s had one or two facelifts since then, but has looked fairly similar since March 2014. So this summer, we asked a group of regular readers what you thought about Cwtch, your biannual newsletter on all things Tŷ Hafan, because after all, it’s your magazine.

Cwtch is a lot of fun to put together and gives a good picture of what has happened throughout the charity over the last six months. Every time you donate to a campaign, take part in an event, buy from or donate to our shops, or volunteer anywhere in the organisation, you make a difference to the lives of Tŷ Hafan families all over Wales and here you can see how your support is put to good use.

In the recent survey, we also asked how you would change Cwtch if you could. There were some interesting suggestions and, while we can’t make wholesale changes this time, over the next issue or two we will look to refresh the magazine.

So please, sit back, relax and enjoy this edition of Cwtch magazine. Thank you for all you do to support Tŷ Hafan. These stories show how your support has made such a massive difference to over 1,000 children and their families since Tŷ Hafan first opened in 1999.

contents welcome................................................................................................02 stories from the memorial garden .................................................04 honouring our nurses from the philippines .................................05 ollie's story..............................................................................................06 your support..........................................................................................09 the big give.............................................................................................10 ordinary people, extraordinary lives................................................12

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Your support has made such a massive difference to over 1,000 children and their families since Tŷ Hafan first opened in 1999

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"I'm proud of the way in which our skilled care teams have responded and their determination to be there for families" It's hard to believe it's almost two years since I made the decision to apply to be Tŷ Hafan's new director of care. I was motivated by its rich heritage of being there for children and families living with the uncertainty and challenges that life-limiting illness brings, and its commitment to reach further and make a bigger difference in the future. I couldn't have been more thrilled that the Trustees placed their confidence in me.

By the time I arrived in late March 2020, the Covid-19 pandemic was placing restrictions on all of our lives. For the children and families who turn to Tŷ Hafan for help and support, this was especially hard, and right from the outset, we were entirely focused on finding ways to help each family feel connected with us, albeit in new ways. I'm proud of the way in which our skilled care teams have responded and their determination to be there for families, bringing comfort, care and fun in a uniquely Tŷ Hafan way.

Today, we are facing into another winter with Covid-19, but this time we are planning more confidently because of the added protection the vaccination brings. We are keeping alert so that changes can be made quickly if needed, but we can't wait to see more children and families at the hospice, in family homes and through our 'stay and play' and sibling events across our communities. A little bit of normality, and we are hopeful this will not only last but grow.

At the hospice, we will soon be completing our refurbishment project, something we couldn’t have done without your support.

This means we will be able to welcome more families - we can't wait to see them and look forward to showing them around.

Without your support none of this would be possible, and we couldn't be more grateful. Thank you from all the children, families and everyone at Tŷ Hafan for the difference you make.

Deborah Ho Director of Care * Photo taken pre-pandemic

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

stories from the memorial garden Tŷ Hafan is full of areas that mean the world to the families who use the hospice. The music room, playroom, the Den and the multisensory room have featured in Cwtch, and each one adds to the lives of Tŷ Hafan families in their own way. But perhaps in terms of places that mean the most, that honour must go to the memorial garden.

Tŷ Hafan’s idyllic location on the banks of the Bristol Channel offers children and their families tranquillity and a haven of relaxation and reflection. The garden makes that even more special. The Birdsong installation, “These names will be forever in our skies”, is a unique and touching way of continuing the legacy of the children and young people who pass through our lives. It aims to remember and celebrate the lives of the children who have died through the medium of birdsong. Each child’s name is translated using Morse code into the song of the bird which sings the loudest in the month the child died and is followed by a silence of one second for each year of the child’s life. The piece currently runs at over two and a half hours and plays in the memorial garden.

You can find out more about the installation by searching ‘birdsong’ on our website.

Pauline Harvey’s daughter Abigail has her memory celebrated in robin song, so the garden means so much to her and her family. Here Pauline reflects on the emotionally charged launch of Birdsong: “I stood in the Memorial Garden gazebo listening as the individual birdsongs came from different areas of the garden. Sometimes one bird seemed to follow on almost immediately from the one before, sometimes the gaps were so long it came as a surprise when the next one began. All the songs were very different from each other, unique and beautiful. And a surprising thing happened, it felt as though the emotional downpour lifted and the sun came out from behind the clouds (the actual real rain continued unabated, the weather was horrific and clearly had no sense of occasion).

“I felt overwhelming warmth and comfort. I was no longer waiting to hear Abigail’s name, that didn’t seem to matter anymore, she was part of the chorus, she was part of every birdsong, the silences celebrated each individual short life, but it felt like all the children were together in the song of each bird. Abigail is not alone, she is with friends and they are joyfully singing.

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“I’m sure each person who experiences “These names will be forever in our skies” will feel something different. The experience will be unique to them. It’s a beautiful, inspired, humbling, breathtaking addition to the memorial garden, for which I personally feel hugely grateful to Tŷ Hafan, Sound Artist Justin Wiggan and Tŷ Hafan’s own Head of Community Services Tracy Jones."

The installation has been recognised by the Royal Society for Public Health and shortlisted for the Arts in Health Award, to be announced in late October.

Brian Medley, who volunteers as a gardener for Tŷ Hafan, said: “I don’t have any personal link to Tŷ Hafan other than being a Penarth boy and everyone in Penarth has a soft spot for the local hospice and the shop in the town.

“The garden at Tŷ Hafan is a good place to learn from the other volunteers, some of whom have gardens and allotments. Working a garden is never the same two weeks running, I have seen the flower beds die off in autumn and get pruned back in winter. I can’t wait to see the new life budding forth in spring, so I get a lot of personal enjoyment from it.

“If improving the environment helps with wellbeing, I feel it’s definitely a worthwhile use of my time and energy. The garden is a special place for the families who use it as a way to make memories, especially as some of the children are so fragile, and I am happy to know that I can have a small part in supporting them.

“I’d also just like to say how special it is that without exception, every member of the Tŷ Hafan team who I have come across in the garden, on emails and the Zoom virtual meeting have been so appreciative.

It’s amazing that a few hours’ work can do so much to lift everyone’s spirits."

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honouring our nurses from the philippines Everyone in the Tŷ Hafan family leaves their mark, no matter how long they are with us.

A group of children’s palliative care nurses from the Philippines made the long trip to Sully over 20 years ago and have been integral to the hospice ever since.

Livet Eyao, Emee Miller, Mai Mai Mallari, Myra Belonio, Gigi Ricaforte, Leila Gariando and Anne Alog have made Tŷ Hafan their home for the last two decades and to mark this anniversary on 1 July, Tŷ Hafan paid tribute to their dedication, personal sacrifice and hard work at the hospice in Sully.

“Their work ethic is second to none and they are all about family.

Individually, and as a team, they have always been there for Tŷ Hafan, so on behalf of all of our colleagues I just want say thank you, because I am not only very grateful for all that they do, but I am also very grateful for all that they are.”

Beth Morgan, Head of Hospice Services, said: “We’re here to acknowledge two decades of service from this dedicated group of nurses from the Philippines.

Gigi Ricaforte, Deputy Lead Nurse, recalls moving to Wales: “When we left our homes in the Philippines to come to work for Tŷ Hafan we were given the opportunity to have a better life. We came here for the jobs. We did not then realise that it was about so much more than work and while we had left our own families behind at home, we were coming into the Tŷ Hafan family.

“Twenty years of children’s palliative care nursing is a huge achievement in its own right, but the pressure of the pandemic has been incredibly challenging for them. Everybody has struggled throughout the past 15 months, but this group of Tŷ Hafan nurses have also had to deal with being thousands of miles away from their families and loved ones, during one of the scariest times I think we can all remember, when their own community was particularly hard hit by Covid.

“Despite this, they have been here, day in and day out, in PPE, supporting the children and families we work with.

“There is no other way of putting it - I am in awe of them all.

They are wonderful, wonderful people, caring, dedicated and ultra-professional.

​“We have always been so grateful for this. We love what we do, and we do it from the bottom of our hearts.”

Anne Alog, Lead Nurse, who has been working for Tyˆ Hafan since 2001, said: “When we first arrived, we didn’t know what to expect but we have had the opportunity to grow and develop our skills. It is a privilege to work at Tŷ Hafan.”

Chief Executive Maria Timon Samra paid tribute to the nurses: “You have given twenty years of your professional lives to our charity. What you have done for children with a life-limiting condition and their families whom we look after, is extraordinary.”

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

ollie's story - for us, tŷ Hafan is a total lifeline Sophie and Sean were just 22 when their little son Ollie was diagnosed with the ultra-rare MOSAIC Syndrome. Here Sophie shares their story and explains how Tŷ Hafan is, quite literally, a lifeline for the whole family.

“Ollie is our second child, a baby brother for Summer. He had to be resuscitated after he was born but after that he was sent to normal ward.

“But it’s not just the respite stays. If I’m having a really a bad day, I know that someone at Tŷ Hafan will have the time to just sit and listen to me.

“He had a sacral dimple on bottom of his spine and when I asked about this, one of the junior doctors said that Ollie had ‘unusual features’ - wide-set eyes and low set ears, but the other doctors dismissed her.

“Me and Sean don’t talk about what we’re going through because we’re both going through it and we don’t dwell on it, we just try to get on with things. So for us, Tŷ Hafan is absolutely brilliant.

“He had difficulty feeding from the start. Then he failed his hearing test. Another junior doctor noticed that Ollie wasn’t making eye contact and suggested further tests.

“All in all, it was four months between his birth and Ollie being admitted to hospital at the Heath in Cardiff. He had a nasal gastric tube put down him for the first time and he fed. Bless him, it was the first time I’d ever seen him content after that feed.

“He was then admitted to hospital and they did loads of checks on him. The doctors told us that they had seen all these features, but individually, not together.”

Eventually Ollie was diagnosed with MOSAIC Syndrome.

“My husband Sean and I were just 22. We were sent away with a Google printout about the condition after a ten-minute appointment. And there were no recommendations as to where to go for further support.”

It wasn’t until Ollie was 18 months that the family had their first experience of Tŷ Hafan.

“I had been afraid of what it was going to be like, but it was lovely, not clinical at all. Everyone’s happy and running around trying to give the kids the best time. Ollie was quite tiny at that point, just 18 months old.”

“I got a huge amount of support from the staff at Tŷ Hafan when my sister, Emma, passed away three years ago from kidney failure,” says Sophie. “She was only 35 and we were very close.”

“Ollie first stayed Tŷ Hafan in September 2020 after he came out of hospital and has been a few times since. It is fantastic.

“I stayed with him in Tŷ Hafan a few times, but I live so close, I don’t want to use facilities if I don’t need to because there are lots of other families out there who need this kind of support too.

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“Plus Summer has had counselling. She was so upset when my sister passed away. It was her first experience of death. After that she was waking up in middle of night, crying, running into Ollie’s room to make sure that he was still breathing.

“Now Summer has just finished another bout of counselling. She’s been stuck in throughout the pandemic. And the counselling has been so, so good for her because now she’s asking questions and talking more about Ollie. I’ve bought her a Worry Monster – if things are bothering her then she writes things down and puts them in the worry monster.

“Now, thanks to the counselling she has had from Tŷ Hafan, Summer feels able to talk about what’s going on more. And I wanted this – I wanted her to be able to get it all out in the open.

It’s ok to cry, it’s ok to be upset.

“Already, Ollie has been emergency transferred to Tŷ Hafan two or three times for end-of-life care. Counselling has definitely helped her to deal with this, and, because for the past year or so due to shielding, she has had to live under the tightest of restrictions.

“Summer’s now back at primary school and things are definitely better for her.

“If we didn’t have support from Tŷ Hafan – we would have no respite at all. The hydrotherapy pool is amazing, plus the socialising with other children and families. The nurses there have known Ollie all his life and they are amazing with him. Plus through the Super Sibs group, Summer gets to speak to children in same position as her and she absolutely loves that. Kelly Jo, in particular, is amazing. During lockdown she was doing video calls once or twice a week, and Summer so looked forward to speaking with her.

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“Tŷ Hafan has been there for us all the way. They have even sent us food parcels at the start of the first lockdown [when we were shielding] and phone us up regularly to check how we are.

“One time, I felt overwhelmed and I went to Tŷ Hafan. One of the nurses, Adrian had just finished working but it didn’t matter. He just sat with me and listened. That gave me enough to get up and go on.”

Kelly Jo is Tŷ Hafan’s Sibling Support Worker and has spent lots of time with Summer, both online and, more recently, in person. She said: “During lockdown, I was supporting Summer on a weekly basis. Initially Summer and I chatted on video calls, we played games and did activities together like slime making, cooking and even made a lava lamp. As soon as I was able to take Summer out, we went for walks to Barry Island and Porthkerry Park.

“One time it decided to pour with rain, so we retreated to the woods for shelter and managed to avoid getting soaked.

Summer enjoyed that day as she had the biggest hot chocolate I’ve ever seen, filled to the brim with marshmallows – it was huge!!

“When Summer returned to school, I saw her at our virtual Super Sibs sessions. Now we finally get to have face to face sessions, Summer comes to all of them, as well as our Roblox group.”

Find out how to be a lifeline for families like Ollie's over the page.

"Tŷ Hafan has been there for us all the way"

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cwtch

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

you can be a lifeline for families like Ollie’s by including a gift in your will for tŷ Hafan Almost a quarter of our caring services are funded by gifts included in peoples' wills each year. We have partnered with the National Free Wills Network to give our supporters the opportunity to write a simple will (or pair of mirror wills) with a local solicitor for free. There's no obligation to include a gift for Tŷ Hafan in your will when using this service, but we hope that after providing for your loved ones you'll consider remembering Tŷ Hafan.

Please do get in contact to hear more about our free will writing offers. Visit tyhafan.org/be-a-lifeline for more information.

Alternatively, call 02920 532 255 or email our Gifts in Wills Advisor Abbie at abbie.barton@tyhafan.org A gift, no matter how big or small, will have a significant impact on our care services. With your help we can continue to be a lifeline, providing vital care and support to all the families that need us, both now and in the future.

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To read more family stories, visit: tyhafan.org/ family-stories

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your support Tŷ Hafan supporters have been out in droves raising money for the charity over the last few months. As ever, there has been no shortage of creativity or determination when it comes to choosing a fundraising challenge. It’s impossible to cover everything that has captured our attention, but we hope you realise how much each and every one of you who takes the time and effort to support us means to everyone connected to Tŷ Hafan.

keeping it vintage A carbon fibre frame and the latest Shimano gears wasn’t on the list for Dave Hutton from Powys, who instead opted for a vintage bike to cycle 100 miles in memory of his son Calum, who was cared for by the team at Tŷ Hafan. ​ ave recalls Callum’s stays at Tŷ Hafan: “My son Calum was one of the first to D be lucky enough to enjoy the facilities on offer at Tŷ Hafan. We were all made to feel very welcome and Calum soon was staying by himself because we as parents were ‘cramping his style’. He had some great times there with the many friends he made there.”

Dave has eclipsed his £1,500 target and has reached a whopping £1,818. Congratulations from us all.

emily walks in their shoes Emily Harmsworth might be only 12, but she has been taking on a massive fundraising challenge in memory of little brother Peter, who was cared for by Tŷ Hafan, taking part in not just one, but four, sponsored walks.

When taking part in Walk A Day in Their Shoes, Emily said: “I haven’t been old enough to take part in most of the Tŷ Hafan fundraising events till now, so I’m really excited about this one!”

The four staff and distances to choose from are our dads’ support worker Dan – one mile; transition nurse Sophie – five miles; complementary therapist Katie – ten miles and hospice nurse Claire – 15 miles.

“I know all of them and couldn’t choose just one, so I decided to do all the walks to support all of them.”

If you would like to take on a fundraising challenge of your own, be sure to email supportercare@tyhafan.org and tell us about it so that we can help you on your way. If you’d like some inspiration, visit tyhafan.org/fundraise-for-us

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

the big give This Christmas, Tŷ Hafan will be taking part in the UK’s biggest online match funding campaign – the Big Give Christmas Challenge. For seven days, it offers supporters of participating charities the opportunity to have their donation doubled. This year, the Christmas Challenge 2021 will take place from 12:00pm 30 November to 12:00pm 7 December.

This fundraising campaign will unite grant makers, businesses and the Welsh public in support of a project at our hospice which will create an inclusive play and therapies space for children with life-limiting conditions. Our new Accessible Play Project will create a unique space for children and their families to explore their world, understand their feelings and express emotions in an engaging multisensory environment.

new van thanks to euro commercials

Tŷ Hafan children often have complex disabilities, meaning standard play areas can be unsafe and inaccessible for them. This leaves families feeling excluded and the child misses out on fun and stimulation. Our Big Give Challenge 2021 project will help to solve this problem by providing specialist and interactive play and therapy support, designed around the needs of children of all ages and abilities.

Tŷ Hafan is delighted to be able to take one of our key services – the ever-popular Stay and Play days initiative – out into the community, thanks to the generosity of Euro Commercials, our local MercedesBenz Vans Dealer.

The space will be transformed to make it more inclusive and user friendly. New ceiling hoists will be added throughout, making it easier to move around the space and interact with play equipment and other children. The hoists will be complemented by specialist slings that are easy to fit, supportive and comfortable. Being hoisted can feel frightening for children, so our playworker will be always alongside the child to make the experience fun and part of our play and therapy journey.

A compact L1 Vito 119 CDI Premium model, the van is the subject of a new sponsorship agreement with Euro Commercials, who chose Tŷ Hafan as its charity to support this year.

The Big Give Christmas Challenge provides a unique opportunity in the year to double the impact of your donation to Tŷ Hafan by matching it pound for pound. We really need your support this Christmas to help us reach our £10,000 public fundraising target via the Big Give Challenge. To find out more about this vital project or to pledge your support today, please get in touch on 02920 532199 or email supportercare@tyhafan.org

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Euro Commercials Managing Director Jeff Carne said: “Given the amazing work that the team at Tŷ Hafan undertake, it was a very easy choice to support and partner this fabulous charity. We are immensely proud that the Vito will take Tŷ Hafan to the community and ensure the Stay and Play service becomes accessible to a much wider audience.”

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remembering your loved ones A donation in memory can be a very special and meaningful way to remember and celebrate the life of someone close to you. However you decide to remember them with Tŷ Hafan, you can be sure that together, you and your loved one will be providing care and support for hundreds of children with life-limiting conditions and their families in Wales, for many years to come. Here are some of the different ways you can donate in memory or collect Tŷ Hafan donations in memory of a loved one: • Create a tribute fund – create a long-lasting online memorial for your loved one at tyhafan.org/in-memory. You can share this page with your friends and family and invite them to share special memories, photos and add thoughtful gifts to remember your loved one.

• F uneral collections and donations in lieu of flowers – ask family and friends to make a donation in memory at their funeral.

• E vents in memory – take part in a walk, run or personal challenge in memory of your loved one, or plant a flower or tree to remember them. You could also celebrate their life by holding an afternoon tea to share lasting memories with family and friends.

celebrate life's precious moments Celebrate a wedding, civil partnership, birthday, anniversary or other important milestone, while helping support children with life-limiting conditions and their families. Asking for donations instead of gifts is an inspirational way to mark a special occasion.

• Wedding fundraising – supporting Tŷ Hafan in celebration of your wedding or civil partnership is an amazing way to make the day extra special! You can choose from our beautiful range of wedding favours, set up an online celebration page, request donation envelopes or enjoy our speech sweepstake cards – all great ways to fundraise without taking up any extra time in the day.

• Birthday fundraising – celebrate your big day by setting up an online celebration page or Facebook fundraiser and share with your friends and family so they can donate to Tŷ Hafan in lieu of birthday presents.

• Tea for Tŷ Hafan – why not throw a tea party to celebrate your birthday, graduation, anniversary or other special occasion and invite your friends, family or colleagues!

From invitations to party games, use our downloadable resources to help plan the perfect party.

Your donation in memory of a loved one or in celebration of a special occasion will help Tŷ Hafan families create and cherish their own happy memories to hold onto forever. Our dedicated team are here to help you every step of the way. If you need any support, please get in touch on 02920 532199 or email supportercare@tyhafan.org Visit tyhafan.org/in-celebration for more information

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

ordinary people, extraordinary lives Children’s Hospice Week (Monday 21 to Sunday 27 June) is the only awareness and fundraising week dedicated to children with life-limiting conditions and the services that support them. It is always a week to mark in the calendar, with plenty of activities organised for our families.

This year we joined with Tŷ Gobaith, the children’s hospice in North Wales, to use Children’s Hospice Week to acknowledge the immense resilience and bravery of the 430 children with a lifelimiting condition and their families across Wales that we support – people for whom everyday living often presents multiple and complex challenges, challenges made even harder by the pandemic.

Speaking during Children’s Hospice Week, Maria Timon Samra, Chief Executive of Tŷ Hafan, said: “Families of a child with a lifelimiting condition are already challenged in terms of how they live their everyday lives. They are ordinary people, living extraordinary lives. The coronavirus pandemic has multiplied those challenges exponentially.

“While so very many of us may have had to juggle home-working and home-schooling amid concerns about the impact of Covid on our families and loved ones, this is really put into perspective when we think of the parents of our hospice children.

“Over the past year, they have also had to be primary care givers for their life-limited child 24/7, without the usual access to support networks. Their usual opportunities for relief have been cut off due to the various restrictions and shielding requirements.

“Our hospices, which our families have described as their ‘lifeline’ have stayed open to provide crisis care and end-of-life support throughout the pandemic and are carefully and safely welcoming more families back.

Andy Goldsmith, Chief Executive of Tŷ Gobaith, added: “We decided to use the occasion of Children’s Hospice Week to draw attention to these remarkable children and their families, to acknowledge just how extraordinary they are, all day, every day

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often with very little support, and how we, the children’s hospices in Wales are calling on the Welsh Government to provide families with the support they deserve and often desperately need, even more so since March 2020 when all of our worlds turned upside down.

“We also want to use this occasion to thank the thousands of individuals, clubs and societies, businesses and organisations that have supported Tŷ Hafan and Tŷ Gobaith so generously throughout some of our most difficult times - we thank them from the bottom of our hearts. We are always delighted when someone would like to help us in some way and we are always open to new offers and ideas,” said Andy Goldsmith.

“Demand for children’s palliative care services in Wales continues to increase and we are constantly evolving the services of our hospices to try to meet this need. While we were delighted to hear that our friends in the children’s hospice sector in Scotland will continue to benefit from 50% government funding,” said Maria Timon Samra, “our charities receive less than 10% Welsh government funding. This makes it very difficult to plan ahead, particularly in the current climate.”

Andy Goldsmith added: “We now need step up our ask for fair and sustainable funding for children’s hospices in Wales so that Welsh children and their families are not unfairly disadvantaged. We are calling on the Welsh government to establish a Lifeline Fund”.

To find out more about the work of Tŷ Hafan and Tŷ Gobaith, visit tyhafan.org/lifeline-fund.

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"Our hospices, which our families have described as their ‘lifeline’ have stayed open to provide crisis care and end-of-life support throughout the pandemic."

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cwtch

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

tŷ hafan scout group awarded queen’s award for voluntary service Congratulations to the Tŷ Hafan Scout Group, the first Scout Group to be based in a children’s hospice in the UK, for being honoured with The Queen’s Award for Voluntary Service, the highest award a voluntary group can receive in the UK. Set up 13 years ago, Tŷ Hafan Scout Group has provided opportunities to learn and grow in a fun and inclusive environment for more than 100 children since it started and is believed to be still the only Scout group to be based in a children’s hospice in the UK. Now, the group, including volunteer leaders Ruth Weltch and Steve Barkley, has been recognised for their outstanding contribution to the community.

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Parent Kyle Jones, said: “Our son Christopher has been attending the Tŷ Hafan Scout Group for over a year. He can be himself and activities are adapted to ensure inclusivity. The group go above and beyond to include all the children despite the capabilities and helps our son grow in confidence and new skills.”

Visit tyhafan.org/latest-news to keep up to date with what's going on at Tŷ Hafan.

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