Tŷ Hafan Cwtch autumn winter 2017

cwtch

newsletter autumn/winter 2017

our news and stories from tyˆ hafan

we all leave our mark inside

alice's story p.8

snowdogs tails in wales p.10

what's it like to be a nurse p.12

cwtch

our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

welcome Welcome to the Autumn/Winter edition of Cwtch.

It is amazing to think that our 18th birthday year is quickly coming to an end. It has been a year that has highlighted the incredible legacy of Suzanne Goodall and the gift that she left the people of Wales.

Tyˆ Hafan has continued to make huge strides in the world of paediatric palliative care with the opening of our new racecourse – phase one of the ambitious garden project with Costain VINCI that we first mentioned to you this time last year. We are so excited to see the next stages of the project reach completion and see these idyllic grounds reach their full potential.

This edition of Cwtch will focus on the activities that our families get up to, whether at the hospice, at home or in the community. Arts and crafts play a major part in positively challenging the children, while also providing siblings, parents and the wider family a fun activity to share together.

Thank you for your continued support and we hope you like the new format and enjoy the stories from Tyˆ Hafan.

contents thank you.............................................................................................................02 stories from the art room................................................................................04 what does leaving a gift in your will mean? .............................................06 alice’s story..........................................................................................................08 snowdogs tails in wales .................................................................................10 what it’s like to be a nurse at a children’s hospice....................................12 fundraising notice board.................................................................................14 leave your mark on wales ..............................................................................15

Here are some of our recent highlights:

An unBeliebable night out for families and staff at the Principality Stadium

The community came together for our Family Fun Day e turned up the volume on W Children’s Hospice Week

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autumn/winter 2017

thank you The following pages are testament to the incredible support that you have given the charity over the years. Without your help, we couldn’t continue to be there for the families who desperately need our help and support.

There is so much for the charity to be thankful for. Ever since Suzanne Goodall put into motion the creation of Wales’ first children’s hospice, the support from the people of Wales has flooded in and has been more than we could have ever hoped for. And that support has never faltered with us now in our 18th year and being a leader in the world of children’s palliative care.

you are incredible!

One of the most important ways for Tˆy Hafan to raise over £4million every year is through our seasonal campaigns. This year’s summer campaign told the story of Kayden and his mum, Lisa, who use our services both at the hospice and at home.

We are always overwhelmed with the generosity of everyone in the Tyˆ Hafan family and this campaign was no exception. Your support was incredible, and thanks to you we raised a fantastic £12,241!

Lisa gave up her business to be Kayden’s carer, as he needs 24-hour care. Lisa was drained and at breaking point when hospital staff put her in touch with Tyˆ Hafan.

We would also like to say thank you for your brilliant Snowdog drawings and the heart-felt messages you sent back. We had lots of fun looking at the drawings and the names of the dogs and we were completely overwhelmed with the messages of support. We have put them up on display in the hospice for the families, staff and visitors to read and they’re bringing lots of smiles to people’s faces.

Lisa said: “When I first went to Tyˆ Hafan it was so strange for me to take a step back and let the nurses look after Kayden. But I can honestly say that Tyˆ Hafan saved me and I can’t imagine my life without them.”

Your donations mean we can continue to support life-limited children and families like Kayden’s all across Wales. Lisa, Kayden’s mum, kindly shared their story and explained that Tyˆ Hafan saved her and she can’t imagine their life without them now.

Kayden has Hydrocephalus, cerebral palsy, autism and chronic lung disease. He is unable to walk or feed himself. The doctors told Lisa that Kayden wouldn’t make it past his second birthday yet five years on, Kayden is a cheeky and intelligent little boy. “No matter what life throws at him he just gets on with it.” said Lisa.

Like any other child, Kayden just loves to play. When he comes to Tyˆ Hafan, he can play and have fun in a safe environment. He especially loves messy play and playing with the other children. Lisa can relax and watch Kayden, while having a chat with staff and other parents who understand what Lisa is going through.

Thanks to your generosity, we can continue to support families in Wales who so desperately need a break and give children the chance to play, have fun and reach their fullest potential.

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

stories from the art room

Children’s palliative care is constantly evolving and there have been incredible advancements over the years. Our own multisensory room, for example, has been a revelation and allows children with a large range of complex conditions the chance to interact and experience various sensations.

But despite all the advances, one of the most popular areas of Tyˆ Hafan is and always has been the art room. It’s the room most synonymous with that colour and vibrancy of Tyˆ Hafan and is where much of the magic is made – it’s always bustling with children creating our famous wheelchair art, siblings making home-made walkie-talkies or corporate supporters getting down on their hands and knees to join in with the fun.

Every child has the right to play. As well as being fun, playtime is so important for developing creativity, physical, cognitive and emotional strength, and imagination, regardless of whether the child is healthy or has a life-threatening condition. Play plays a major part in allowing children to reach their potential, while giving their families the life-long memories created by sharing these wonderful moments with their child, brother or sister.

Scarlett and Aiyla loved dressing up as cowboys and cowgirls and making wanted posters of themselves on our special Cowboys and Indians dress up day. But it wasn’t just the girls

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who were making precious moments that day. Scarlett’s mum Clair and dad Chris and Aiyla’s mum Lindsay were there to watch their children form a lovely bond while they learned new skills and accomplished new tasks. Our friends from TATA Steel in Port Talbot also got to see first-hand and share some of these moments while they were visiting the hospice to see how their fundraising achievements will be put to use when they helped some siblings paint their own cowboys and Indians.

And it is days like this that highlight the different aspects of Tyˆ Hafan which your support enables us to deliver to children and families. Whether it is a time of tranquil reflection with your child, a joyous celebration of what children can achieve or forming bonds that last a lifetime, you can find them all in the art room.

autumn/winter 2017

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cwtch

our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

what does leaving a gift in your will mean?

Leaving Tˆy Hafan a gift in your will means that you are helping to support families when they get the news that their child is expected to have a short life. It means that you are helping their child to live a full life in spite of this diagnosis. It also means that you are helping to support families when their child sadly dies. It means you are leaving your own legacy.

One of the ways in which Tyˆ Hafan helps families manage their grief is through a memorial garden based at the hospice, where families can come to reflect, to remember their children and to seek solace. The garden is also the venue for memorial services, which are held twice a year every year and where the names of the children who have died are read and remembered.

You’ll have seen in a previous issue of Cwtch that the Tyˆ Hafan gardens are getting a complete makeover this year thanks to our friends at Costain VINCI. As part of this project, we have been seeking funds to upgrade the existing memorial garden with an audio project to further comfort our families.

We are creating an immersive space for families to reflect and remember their child within the new garden. Sound equipment underneath the outdoor canopies will enable families to play music of their choice – perhaps their child’s favourite song or sounds that bring back cherished memories. Even more significantly, the sound system has the ability to have the names of all the children who have passed through the doors at

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Tyˆ Hafan translated into Morse code. The code is programmed to be resampled into birdsong, creating beautiful sounds of nature – a wonderful tribute to the children. This birdsong will be played during the daytime and can actually influence real birds to sing the names of Tyˆ Hafan children.

In essence, bereaved families can come and sit in our memorial garden surrounded by their children’s names being sung by the birds in their memory.

This special project has only been made possible thanks to the very generous combined legacy gift in will from Lawrence Granville Davies, Mary Nancy Margaret Pike and Clifford Raymond Pike.

The legacy of this gift will have a lasting impact on generations of families for years to come. If you’d like to hear more about how you can leave your mark on Wales by leaving a legacy gift in your will, please contact legacy@tyhafan.org

autumn/winter 2017

a designer donation Our wonderful friends of the past chose to remember Tˆy Hafan in their will in many different ways. Recently, Tˆy Hafan was bequeathed a house and its contents which included a beautiful collection of vintage clothing.

The impact of Mair Griffiths’ significant gift went beyond a financial investment. We organised a photoshoot and these images are now helping us promote our shops and the fabulous donated stock we receive.

We are very proud of our shops located all over south Wales and this is down to the high quality of the donations we receive. Our shops simply wouldn’t work without you, so a huge thank you to all of our donors, customers and volunteers for your continued support. Next time you are in Abergavenny, Cardiff or Cowbridge why not pop into our Emporium shops to see what vintage items you can find!

handcrafted by tyˆ hafan You don’t have to visit the art room to express your creativity! We are on the lookout for you creative types to volunteer and help us transform our pre-loved donations into something fresh and unique to sell in our Tˆy Hafan shops. All proceeds of our shops go towards making a short life a full life for children who use our services. If you would like to be a part of Handmade for Tˆy Hafan, please contact Penny, Project Manager Upcycling & Vintage, on 07787 296294 or handcraftedby@tyhafan.org 7

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

"We started going to Tˆy Hafan last year and haven’t looked back"

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autumn/winter 2017

alice’s story When Alice was born at 34 weeks, the doctors delivered devastating news to her mum and dad – their newborn baby girl had just 20 minutes to live.

Barry and Rebecca had known their daughter was at risk since their 20-week scan had picked up problems with her skull and jawline, with serious implications for their unborn baby’s safety. But they could never have imagined the difficult road that lay ahead of them.

“At 30 weeks, they said I was at risk of premature labour due to severe polyhydramnios (a build-up of fluid in my stomach) which could kill me and Alice,” said Rebecca. Alice was born prematurely, weighing a healthy 6lb 10oz. But her parents’ joy was about to turn to distress.

“They got her out and she was crying.

Everyone was relieved. But within minutes of her birth she needed an emergency tracheotomy. Then she took a turn for the worse and they said we were going to lose her in 20 minutes,” said Rebecca.

Alice pulled through, but the consultant told her parents she had two collapsed lungs and flat brain waves. This meant Alice potentially had permanent brain damage and a decision might need to be taken over whether to switch off her life support.

But the little girl battled against the odds and, after seven weeks with her life hanging in the balance, she was finally allowed home.

“It was a relief to get her home but quite scary as well – we had to bring home all this equipment and she needed 24- hour care,” said Rebecca.

“She had only been home for ten days when she caught a cold – she was being sick and her heart rate and stats kept dropping. She was rushed into hospital, to the Paediatric Intensive Care Unit, where her condition deteriorated rapidly. She picked up enough to return to the High Dependency Unit for her first Christmas. But just after New Year she got bronchiolitis.

“Once again, the doctors said we could lose her. We were told to prepare for the worst. We were terrified. We had an emergency christening for her and were referred to Tyˆ Hafan for end of life care.”

Miraculously, Alice’s condition improved.

But she wasn’t yet out of danger – she needed surgery to remove her middle lobe on her right lung which was pushed to one side, squashing her heart and her stomach.

Two weeks after surgery, Alice returned home for good. She was diagnosed with Goldenhar Syndrome, which is a rare congenital condition, with micrognathia and possible trigonocephaly, which is where the plates in the upper skull fuse together permanently. Both will require major surgery.

investigates her room, which is usually decorated fit for a Disney princess. She loves it.

“Tyˆ Hafan helps us because Barry and I get time together as a couple and with Scarlett. We get to have a break and not worry – we come back really relaxed.

“Tyˆ Hafan provides us with the sort of life opportunities we wouldn’t otherwise have had – we’ve even been on a family holiday thanks to them, which is something we thought we would never do.”

Alice’s condition is potentially life-limiting, but with support from Tyˆ Hafan, she and her family have continued to thrive.

“Alice is almost three now and she’s extraordinary. Three years ago I was in the assessment unit, panicking that I could die, Alice could die, my daughter Scarlett would be without her Mummy, my husband Barry would lose his wife and his baby and be left to bring up Scarlett alone,” said Rebecca.

“Now look at her. They said she would have no brain activity – and they’ve just done tests and she’s ahead for her age and is due to attend mainstream nursery.

The doctors see her now and don’t believe it’s the same child. It's not just doctors amazed by her but the nursing staff, community teams, family and friends.

“We started going to Tyˆ Hafan last year and haven’t looked back. We go there for short break care, day care, music therapy and complementary therapy – we get some of the services at home too. When we go to Tyˆ Hafan she runs in, shouts ‘I’m back!’, finds her favourite toys and

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

autumn/winter 2017

snowdogs tails in wales There are 43 giant Snowdogs and 57 Snowpups on the loose around Cardiff and the Vale and we want you to help us find them all.

Each dog is uniquely designed by incredible artists and the pups by local school and learning groups and they all have their own tail to tell.

We love our Snowdogs and Snowpups and we can’t wait for you to meet them all. So pick up a map or download the app and enjoy scampering around Cardiff and the Vale this autumn with Snowdogs: Tails in Wales.

Download our app on the App Store or Google Play Store to unlock the whole pack! www.snowdogstailsin.wales @snowdogswales

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cwtch

our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

what it’s like to be a nurse at a children’s hospice

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autumn/winter 2017

Our nursing team are integral to our care services, providing round-the-clock medical care 365 days of the year. Be it making a child comfortable through to delivering lifeline medications, your fundraising efforts ensure our nurses can continue to meet the needs of children with life-limiting conditions. Candice St John, a Lead Nurse, shares with us what it is like to work at Tˆy Hafan.

I’ve been a nurse for 15 years. I qualified in paediatric nursing at the University Hospital of Wales, Cardiff, and worked there for three years before coming to Tyˆ Hafan.

Since I was a child I’ve wanted to be a nurse. I vaguely remember being bought a nurse’s costume when I was five and I’d pretend to be nurse, taking people’s temperatures! Until I actually went into nursing, I just thought being a nurse was all about making people better – I didn’t understand everything else that comes with it. I love it – it’s what I’ve always wanted to do. And I’ve always loved children; they’re so resilient and happy and you can be silly with them.

I hadn’t thought about working at a children’s hospice until a friend of mine was coming to Tyˆ Hafan and I thought it sounded like the perfect job for me.

I had heard of Tyˆ Hafan and had some understanding of what nurses did at a children’s hospice, but I didn’t know what it was really like before I came here.

I love my job; I’ve loved it since my first day. I just remember coming in and everyone was happy and helpful and welcoming. It wasn’t scary because everybody was so nice.

At a children’s hospice you can help make memories for the families. You’re not just a nurse, involved in some of the potentially negative experiences of clinical care; you get to do everything

else and can be the fun person too, taking them to the pool or to the playroom for arts and crafts, sing-a-longs and story time.

The biggest challenge is having to deal with the fact that a child is going to die, especially since becoming a mum myself. But you have to remain professional and not make it too personal. Generally, you go into the nursing profession to make people better. Here it’s about giving them the best possible time they could have, with everyone they love around them.

When I was newly qualified and working in the hospital, I worked with a little boy called Jack who had spent a lot of time in hospital. After six months I had built a bond with him and his family. Then I came to Tyˆ Hafan and he was referred here when he was about five, so I worked with him again. When he died I found it really tough; it was really hard for me. But I had great support from the staff here; we all chat amongst ourselves and support each other. The care team is a family. We look after each other.

If I’m on an early shift I come in at 7am for the handover. Because I’m a lead nurse, I would be in charge so I manage staffing and assign members of staff to look after the children that day. I check the drug charts, then I sort the medications at 8am which takes an hour or two. I help get the children up and washed and dressed, then at lunchtime

I sort more meds and help feed the children lunch.

All the children are treated completely as individuals so everything is tailored to them. Each child is so unique so we need to be adaptable as a care team.

And you have to be able to quickly change your mood.

You will be with a child who is at the endof-life stage, solemn and empathising with the family in the room, then you leave the room, walk up the corridor and it’s madness – children running about dressed as Power Rangers, having a sing-a-long or playing games. As nurses, we’ve just got to adapt to that and instantly switch back to being happy and cheerful. I found it hard at first to do that but it’s something you get used to after you’ve been here a while. You don’t want to be solemn and sad around the families; they go through so much and they come here for a break.

When I tell people what job I do, they always make a face and say ‘I couldn’t do that’. I always have to explain that it’s not sad here, I love my job. I personally think it’s the best job anybody could have. Tyˆ Hafan is a happy place, full of laughter and fun.

Candice St John

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cwtch

our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

fundraising noticeboard Here is a selection of some of the fun and games that our amazing supporters have been getting up to since our last edition. No matter what you do to raise money for Tˆy Hafan, every penny is vital in allowing us to provide the care and support for our families that you see in these pages. We say it a lot, but we truly couldn’t do what we do without you.

Nigel Williams cycled Wales in a day - 185 miles through the mountains from North to South Wales

re, like Quantum Paying for a day of ca a number of Advisory did through groups to raise for y activities, is a great wa fan Ha ˆ y T for money

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eir tars celebrated th The Tyˆ Hafan All-S the at ts en m ve ising achie d incredible fundra en r ice hockey week UK Charity All-Sta

The Big Cwtch festival have donated this fantastic graffiti art by Lloyd Graffiti as well as the car parking fees from the festival

The Fast P arts Rally managed over two to pay for days of c are at Tyˆ their ann Hafan wit ual rainb h ow rally!

Chris and his fellow students at Dwr y Fe lin went on a sponsored walk for Tyˆ Hafan... the sun even paid the m a welcome visit

leave your mark on wales All of the children supported by Tˆy Hafan supports will leave their priceless mark on the world and there’s a very special way that you can leave your mark too – by including a gift for Tˆy Hafan in your will.

Contact us If you have any questions or would like any more information, please contact us on 029 2053 2275 or email legacy@tyhafan.org

...Or fill in your contact details and we will get in touch with you

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We value your support and respect your privacy. We will never sell or share your details and promise to keep them safe.

For further details on how your data is used and stored, visit www.tyhafan.org.uk/data-protection Return this form to - Freepost RTBS – YCZU – JZSJ, Legacy, Tˆy Hafan, Hayes Road, Sully, CF64 5XX

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Give a dog a furr-ever home!

We hope you’ve enjoyed exploring Cardiff and the Vale while searching for our mischievous Snowdogs and Snowpups!

Here are a few dates for the diary.

8 - 10 December

12 December

Farewell Weekend Come along to the Capitol Centre in Cardiff to see all of your favourite Snowdogs and Snowpups together in one place and complete your collection.

Snowdogs: Tails in Wales Auction Give your favourite Snowdog a furr-ever home by bidding at our auction in the Cardiff Marriott.

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Event sponsor

‘The Snowman™ and The Snowdog’ © Snowdog Enterprises Ltd 2017 THE SNOWMAN™ Snowman Enterprises Limited ‘The Snowman’ by Raymond Briggs is published by Puffin