Tŷ Hafan's Cwtch Spring 2020

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newsletter spring/summer 2020

our news and stories from tŷ hafan

transitioning to the future inside 1

awarding excellence in transition nursing p.6

molly and emily’s story p.8

t ŷ hafan’s

miracle mum p.14

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welcome Welcome to the Spring/Summer edition of Cwtch!

We were delighted to be able to reveal our plans for the hospice in the last edition of Cwtch and, now that work has begun, we can really start to get excited for this new chapter in Tŷ Hafan’s history.

It’s important that the hospice can meet the demands of children’s palliative care in 2020 and beyond, so there’s plenty of work to be done to get ready. But this work is vital for Tŷ Hafan and the families that we support and you can read more about it in the pages to follow.

our news and stories from t ŷ hafan

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makin fit for

Of course, the refurbishment is just one element of what’s been going on at Tŷ Hafan over the last six months and we can’t wait to share our stories with you.

Once again, we must reiterate just how important your support is to Tŷ Hafan. Everything we do, whether that’s a large-scaler project like the refurbishment or one of the many day-to-day activities that make Tŷ Hafan the place it is, none of them would be possible without you and people like you.

Thank you from everyone at Tŷ Hafan.

contents welcome.............................................................................................................02 a hospice fit for the future................................................................................03 holding their hands, a little longer................................................................04 awarding excellence in transition nursing.................................................06 lofty goals............................................................................................................07 molly and emily’s story.....................................................................................08 ambulance partnership wins award...........................................................10 ride to the rugby..................................................................................................11 events roundup..................................................................................................12 t ŷ hafan miracle mum.....................................................................................14 sully friends of t ŷ hafan celebrate 25 years..............................................16 tonik energy is t ŷ hafan green!.....................................................................18

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So, what are these plans we have for the hospice?

Well, children’s palliative care has advanced in ways we could hardly imagine when we first opened. Children are living longer and leading more fulfilling lives as a result of the care they receive.

So, to make sure the hospice can continue to meet these needs, we’ve begun a major £1.5million refurbishment project which will allow us to be ready for the next generation of TŷŷHafan children and their families.

Our services are essential to improving the quality of life of both the child and their families and we want to provide the families who use the hospice with the best possible environment to receive the highest standard of care.

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ng a hospice r the future We are refurbishing the entire hospice from top to bottom, including the child and family bedrooms, as well as all living spaces.

By upgrading each of the ten children’s rooms, we will optimise space and improve all the facilities including airconditioning units and beds. Similarly, with the family rooms, we will create a private, homely and comfortable atmosphere.

After consultation with families, the upstairs family area, with communal area and kitchen, needs to have a greater feeling of privacy, while still being welcome-to-use.

We want to build a purpose-led therapeutic environment that meets the complex needs of both the child and their family, while always being inviting with bright open spaces.

Above all, we want children and their families to feel as comfortable at T ŷ Hafan as they do their own home.

So these are very exciting times for Tŷ Hafan and the changes will be a much-needed boost to the charity.

We’ve been absolutely blown away by the support we’ve received so far from members of the public, community groups, corporate supporters, and grants and trusts.

This project, one that will ensure that Tŷ Hafan can be there for the families who need us well into the future, would never have been possible without our supporters. So, 20 years after you helped Suzanne Goodall open the first children’s hospice in Wales, you are there to help make sure we are fit for the future.

Thank you.

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our news and stories from t ŷ hafan

029 2053 2199

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holding their hands a little longer It’s impossible to overstate the fantastic support we received over Christmas to kick-start our refurbishment project and we are delighted that the work is now well underway in the care wing and family rooms.

Now our attention turns towards the next phase of the project: a new transition suite for our teenagers.

20 years ago, we set up a dedicated support network called The Squad for our older children and young adults, those with a growing need for their own space and independence. The Den, a specialised room specifically for Tŷ Hafan teens, gave them their own space where they could socialise and feel like teenagers.

Today, medical advances and outstanding parent care has meant that many of the life-limited children we support are starting to live well into their twenties, so we need to create a new space for them. Sadly, the Den can’t serve its purpose anymore which means we regularly use coffee shop facilities at three separate adult hospices.

Transition is a scary, uncertain time for young adults and their families because there’s a big difference between the support they receive at Tŷ Hafan and what is possible in adult services. So the Squad is there to help ease the transition, both by allowing young adults to be young adults, as well as being a source of support to the whole family during a time of change in their lives.

The Squad gives both the young people and their parents the opportunity to make friends and socialise in a setting that suits them. They can go out to the cinema, go and see a comedy show or just chill out together with a takeaway and a film. These activities mean the world to the Squad and their parents because they get to share in a ‘teenage experience’.

These outings, however, can be very needs-dependent and often aren’t suitable for everyone. It might be that some don’t feel comfortable in such public settings or their needs are so complex that the trips out aren’t possible in terms of accessibility and nutrition. This is why we need a space that is specifically for our young adults.

The new transition hub will offer some much-needed social opportunities to bring a degree of normality to their lives.

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It will be a place where they can meet their friends, have a coffee and enjoy some independence. It also provides a security blanket for those who may have anxiety about leaving their house, as the hospice is a familiar, comfortable place.

The hub will include a kitchenette with height adjustable surfaces where our young people can independently learn to make drinks, for example, something we certainly take for granted but is an inclusive activity for all abilities. There will be a specialised social area where they can sit and have a chat, access peer services, get support from staff and enjoy the light and airy environment.

Lastly, there will be a tech zone where they can watch a movie, do karaoke or play video games. The tech zone will include a projector cinema screen, giving anyone who can’t go to the cinema, the chance to have a similar experience.

If you’d like any further information on this project, please contact us at info@tyhafan.org.

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"The Squad gives both the young people and their parents the opportunity to make friends and socialise in a setting that suits them."

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our news and stories from t ŷ hafan

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awarding excellence in transition nursing Last year we told you how our nurses bring the medicine and the magic to Tŷ Hafan children, how our one-to-one care differentiates us from nurses you’d meet on a ward. They are wonderfully skilled nurses and clinical care is always at the forefront of what they do, but they bring a little something different too, that Tŷ Hafan sparkle that lets families make the most of the time they have together.

To aid their transition, Sophie Williams, who has been a nurse at T ŷ Hafan for almost 20 years, has been appointed our first specialist transition nurse – a post funded

by UK-wide charity, Together for Short Lives.

The transition stage is classed as between ages 14 and 18, an already complex and anxious time in a teenager’s life, and it’s become obvious that more specialist and focused care is needed as they shift from paediatric to adult palliative care services. Sophie has seen lots of these children come and go, but she’s also witnessed young people live far beyond their life expectancy and well into adulthood.

Despite only having been in this post since 2018, Sophie’s made huge improvements in the transition support we offer young adults and has already developed new initiatives to empower young people

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who are close to graduation age, as well as those who are in adulthood.

Through innovative methods, Sophie bridges the gap for young adults and their families and guides them through a new major step in their lives, ensuring that they’re prepared as a family for the changes around health, social, education, independence and even housing too.

Her incredible work has not only been recognised by Tŷ Hafan and the young adults she supports but also by RCN Wales after being awarded the RCN Wales Suzanne Goodall Paediatric Nursing Award in 2019.

Here’s what RCN Wales had to say about Sophie: “Sophie has been exceptionally innovative in utilising coproduction and personal vision to maximise the opportunities for young people

with palliative needs to embrace life to the full. This has enabled young people to reach their potential through accessing higher education and enhanced life experience through travel.”

“In her role as a Specialist Transition Nurse, Sophie has demonstrated great skill in communicating with young people with a wide range of physical and learning disabilities about difficult and distressing subjects, including advanced care planning, future treatment options, emerging sexuality and living independently from their parents.

This service has been welcomed by both young people and their families.”

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lofty goals Remember that crazy bunch of Tŷ Hafan dads who decided to strip off in the depths of winter on Sully beach so that they could make a calendar to sell and raise money for the charity that supports them?

And the dads who thought that climbing the highest peaks in Scotland, England and Wales, as well as tacking on another couple of Welsh mountains on their way, all in 55 hours?

They even won a JustGiving award for that one!

At dawn on 4 July (day three), the team will start the seven-hour, 52-mile cycle ride from Brecon to Cardiff Bay along the Taff Trail.

“The schedule means that sleep may be limited to the minibus on the night of day one,” said participant, Chris. “With such early starts and late finishes, sleep deprivation could be an issue.”

Well they’re at it again! And this time they’re going to push themselves a little bit!

Still on the climbing theme but with a twist, between 2 and 4 July 2020, a team will climb ten Welsh mountains before cycling 52 miles from Brecon to Cardiff along the Taff Trail, again, all to be done in a maximum of 55 hours, in a challenge called #10nTaff.

Five years ago, Chris and Clair’s daughter Scarlett was born struggling to breathe and was rushed to intensive care. After a few weeks, Scarlett was diagnosed with a rare life-limiting chromosome disorder that resulted in Scarlett having a number of complex conditions such as epilepsy, a hole in her heart, scoliosis of the spine, kidney problems and muscle atrophy of her brain.

The schedule for the #10nTaff is brutal. After driving up to North Wales on Wednesday 1 July, the team prepare themselves for three days of almost non-stop physical exertion.

“As you can imagine, our whole world came crashing down around us,” explained Chris. “At this point, T ŷ Hafan came into our lives giving us the help and support we needed on our amazing journey as a family.”

1. Carnedd Llewellyn (Carneddau Range): Elevation – 1,064m (3rd highest in Wales) 2. Carnedd Dafydd (Carneddau Range): Elevation – 1,044m (4th highest in Wales)

We want to wish the #10nTaff group the greatest of well wishes when they take on this challenge. Their strength and determination to go that extra step to help raise both funds for and awareness of Tŷ Hafan is incredible.

3. Glyder Fawr (Glyderau Range): Elevation – 1,001m (5th highest in Wales)

If you’d like to hear more or to support the team, please visit their JustGiving page at: justgiving.com/companyteams/10nTaff

4. Garnedd Ugain (Snowdon Massif): Elevation – 1,065m (2nd highest in Wales) 5. Snowdon (Snowdon Massif): Elevation – 1,085m (Highest in Wales) Late in the evening of day one, the team is driven down to the Black Mountains in west Wales. After a few hours rest, at dawn on 3 July (day two) they begin their assault on the five highest mountains in the Brecon Beacons.

1. Fan Brydeiniog (Black Mountains): Elevation – 802m 2. Fan Hir (Black Mountains): Elevation – 761m 3. Waun Rydd (Central Brecon Beacons): Elevation – 769m 4. Pen-y-Fan (Central Brecon Beacons): Elevation – 886m 5. Cribyn (Central Brecon Beacons): Elevation – 795m

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o u r n e w s a n d s t o r i e s f r o m t ŷ h a f a n

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molly and emily’s story Sisters Molly and Emily bring so much joy and love to their mum and dad’s lives, but since they were born, life is not how their parents James and Sarah ever expected it to be.

Both girls were born healthy babies two years apart, but as time went on, their parents noticed their daughters weren’t developing as they should be. In 2008 Molly, now 16, and Emily, now 14, were separately diagnosed with Rett Syndrome – a very rare condition that affects the development of the brain. Doctors have also explained to James and Sarah that it was likely that the girls’ lives would be short.

Mum Sarah said: “Looking back to before their diagnosis, we knew something was seriously wrong but I suppose we just didn’t want

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to believe it. The doctors eventually told us about their condition and in the space of just eight months, I‘d been told that not only one but both of my beautiful girls would have short lives. I’ve never been able to find the words to describe that time, but I will never forget how alone I felt. I had plenty of family around me, and my mum’s support was invaluable.

But at the same time, I also had a feeling of isolation because of what we were facing”, she added.

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“Molly and Emily’s condition is so rare and complex that we just don’t know what’s around the corner. But we do know that whatever happens, T ŷ Hafan will make sure we never face it alone.”

As the girls’ condition developed, Sarah became more of a carer than a mum. She felt as if she had no one to turn to, until the family’s social worker referred them to Tŷ Hafan. Sarah recalls how frightened she was on that first trip from the family home in Fishguard to the hospice in Sully, thinking that Tŷ Hafan was a place for dying children.

Sarah said: “But as soon as we got there, I instantly felt like months of worry and isolation were behind us. We were around other families in the same position as us and we had the extra physical and emotional support from professionals. We were no longer alone. It was as if Tŷ Hafan was saying to us: “sit back and relax, we’ll look after you all now’”.

Sarah continued: “Our short break stays mean so much to us.

The girls share their own room and James and I stay in the family rooms. We all do things together, whether that’s going in the hydrotherapy pool, doing arts and crafts, having trips out or spending time in the playground which is specially designed for wheelchairs. We just have time to be together as a family. James and I might go out for a meal or shopping and sometimes I just go off on my own for a little bit of ‘me’ time. All of this would be impossible for us to do without the support of Tŷ Hafan”.

And the support doesn’t stop at the hospice. Sarah explained: “Our family support practitioner has given us support that has truly changed our lives. She helped us to get our purpose-built bungalow so that the girls can move around their own home like anyone else can”.

“Molly has recently been diagnosed with scoliosis – curvature of the spine – and will need surgery at some point. Both girls have regular seizures which are controlled by medication. If they become poorly with a bug or a cold, there’s a risk of their fits increasing. As the girls are growing, it’s becoming more and more difficult for me physically to support them, so we need more equipment that will help improve their mobility. Tracy, our support worker, has helped us out with so many things, whether it’s chasing up any equipment that we need, liaising with our local authority, assisting us with financial issues and even helping us have a holiday. It all means so much – even if it’s just a phone call or email to check we’re OK”. Sarah added: “It’s difficult to describe what our lives would be like without Tŷ Hafan. It’s something I don’t really want to think about. I often find myself counting down the days to our next visit.”

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our news and stories from t ŷ hafan

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ambulance partnership wins outstanding award Over the last year we’ve been working with the Welsh Ambulance Service Trust (WAST) on a partnership project to make end-of-life transfers for the child and family as stressfree and as comfortable as possible. And the project was recognised in the NHS Wales Awards evening in September, winning two esteemed awards.

WAST Non-Emergency Patient Transport Service provides pre-planned transport to end-of-life care patients, but emergency ambulances are often called when a child’s condition quickly deteriorates, putting extra strain on the service.

This has led to Tŷ Hafan being one of four sites involved in a pilot scheme with the Welsh Ambulance Service regarding the creation of an End-of-Life Care Rapid Transport Service. The scheme has resulted in a dedicated booking number and desk that services Wales, developed alongside palliative care clinicians.

Following initial journeys, it was found that we needed to make the ambulance more child and family friendly so, using funds from Children in Need, we’ve

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managed to buy an iPad, toys, books and distraction equipment to make the journey as comfortable as possible.

Another touch that differentiates the Non-Emergency Patient Transport Service is the addition of epaulettes for the ambulance staff that are based on the handprints displayed around the hospice.

The NHS Wales Awards were held on 19 September and we are delighted that the project won the Delivering Person-Centred Services Award. There were eight different award categories and each category winner was also nominated for an overall award for the Outstanding Contribution to Transforming Health and Care Award which we also managed to win.

The service is now available across Wales and has carried out almost 600 journeys. A recent review of the service revealed the median waiting time for an ambulance booked through the End-ofLife Care Rapid Transport Service is 52 minutes.

It’s been fantastic to be a part of this scheme and we are delighted to see it going from strength to strength.

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not too far to go It’s Six Nations Season at time of writing and Wales are well into their Grand Slam defending campaign. The first away game against Ireland had Tŷ Hafan supporters scrambling to get to Dublin any way they could and resorted to cycling the 250 miles from the Principality Stadium in Cardiff to Dublin’s Aviva Stadium.

Ride to the Rugby Dublin was Tŷ Hafan’s second cycling challenge to a Six Nations game following last year’s cycle to Paris.

And we just about got lucky with the weather which is highly surprising given how dramatic it’s been this winter.

However, the riders did have to face a hefty headwind for much of their journey.

Never did they let the conditions dampen their spirits though and the participants did fantastically, reaching Dublin with time to spare before kick-off.

Thank you so much to everyone who took part and to White Rock for their planning of the route and supporting the riders on the way.

Paris will be the destination again in 2021 and if you’d like more information on Ride to the Rugby 2021, please email sali.thomas@tyhafan.org.

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events roundup

our news and stories from t ŷ hafan

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We’ve never had such a varied event’s calendar than in 2019 and, no matter what the challenge, so many of you were there to help raise money for Tŷ Hafan and have a whole lot of fun along the way.

the most magical weekend around Since our last update, Tŷ Hafan went to Disneyland Paris for their incredible RunDisney weekend where participants could take on their choice of 5Ks, 10Ks and/or half marathons.

Katie Bonnè saw the weekend as the perfect challenge to celebrate her one year anniversary as a Tŷ Hafan nurse, a role she had “fallen in love with…and was already thinking of ways I could help raise more money for our hospice”.

“At 6:30am on 22 September, I found myself at the start line for a thirteen-mile race thinking to myself ‘yeah... I should have trained for this’.

“Over the next few hours, I experienced every possible emotion there is. To begin with it was exhilarating, we were running through the parks being cheered on by Disney characters and staff members. We even ran through Sleeping Beauty’s castle whilst the fountains were on, it was truly magical and I felt like I could run forever - until I got to the 9K marker. I wasn’t even half-way and I was already contemplating giving up, I had never felt so defeated - but then I reached the 12K marker. There were different Disney characters for every marker and this one was ‘Lilo and Stitch’. A young lady we recently cared for loved Lilo and Stitch and I had promised her I’d keep an eye out for them on my trip. Whether it was a sign or not, something clicked and I remembered why I was doing this and who I was doing it for. I was doing it for all the families I had met over the year, all the children I had fallen in love with.

“Just before we left for Paris the family of this young lady had thanked us for everything we had done for her, but the truth is, it’s us that feel thankful. She was an incredible young lady and it was an honour to be a part of her life. Our motto at Tŷ Hafan is ‘making a short life a full life’ but it’s our lives these kids touch and change forever. Running a few more miles didn’t even compare to the battle these families faced daily.

“By the 13K marker I had vomited and was starting to feel very lightheaded but I came across yet another sign. The father of a little girl we cared for earlier in the year had given me her bunny rabbit to run with. As I passed this marker, a runner appeared in front of me with the name of this little girl on her t-shirt. I became even more determined than ever and by some miracle, I eventually

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reached the 19K marker. This was when I started getting emotional, apparently this is normal but I couldn’t hold back the tears and cried solidly for a good ten minutes until I reached the 20K marker!

Suddenly I had half a mile to go and I couldn’t believe it. I had one last burst of energy and ran as fast as I could, all the way to the finish line. I felt euphoric.

“I can honestly say it was one of the best experiences of my life.

They were lying when they said ‘every mile is magic’ but I already can’t wait to do it all over again! It was so well organised and when we weren’t running we were exploring the Disney parks and watching the parades or fireworks. Myself, my cousin Abi and my colleague Layla (who ran the 10K race) can’t recommend this event enough. Not only did we get medals that put all other medals to shame but we have raised over £3,800 between us.”

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lights, camera, action The Tŷ Hafan annual ball is always a wonderful evening filled with special guests, supporters, families and stellar entertainment, but this year’s ‘Lights, Camera, Action’ ball raised a whopping £96,486, three times our fundraising target, all in support of our hospice refurbishment project.

James Meacham, one of our bereaved dads, spoke about his son, Thomas, who we cared for at Tŷ Hafan, and all about the support James and his family received from us. The audience learned how Thomas, who loved karate, rock climbing with his dad and walking his Labrador, was a healthy young boy up until he was eight years old. But then everything changed and Thomas died in June with Adrenoleukodystrophy (ALD) - a rare and incurable condition that affects the white matter of the brain, causing deafness, blindness, and physical weakness.

James’ account of Thomas and the life-changing care he received at Tŷ Hafan completely struck the room. The guests fell silent as everyone listened to James’ every word. Despite having to take some deep breaths, James captured the audience with his honesty and humour, and as the speech ended, every person in stood up, giving James a much-deserved standing ovation.

This was the turning point in the evening when everyone wanted to do everything they could to raise money for Tŷ Hafan in Thomas’ memory.

Another highlight on an evening full of them was the performance of Alfie Jones, a Tŷ Hafan sibling. Earlier this year he won a competition to sing at the Butterfly Ball in London (for Caudwell Children), singing alongside the likes of Leona Lewis and Chaka Khan. We felt very lucky to have him perform at the ball. He sang a magical rendition of ‘Bring Him Home’ from Les Misérables which was certainly a highlight of the evening (and a tear-jerker!)

Thank you to everyone who made the evening such a success, from compare for the evening, Claire Hingott, Tŷ Hafan ambassador Mark Colbourne MBE, London-based soul and Motown band ‘All That Soul’ who brought glitz, glamour and timeless live music and every one of our kind guests for their support.

a new year’s day dip You’d be forgiven for taking your time emerging from bed the morning after the night before, perhaps nursing a sore head after last night’s New Year celebrations.

But hundreds of brave souls decided to blow away the cobwebs by plunging into the New Year at our Barry Island New Year’s Day Dip. With temperatures at just seven degrees, over 2,000 people gathered on Barry Island Beach to take a dip in the sea and raise much-needed funds for Tŷ Hafan.

This was our second year running the event, having being handed the reins by Barry local and lifeguard, Rob Salter, who founded the event 36 years ago. The event has since grown in fame and popularity and now thousands of people brave the chilly channel waters annually on 1 January, many still following with the usual ‘rules’ – run in, dunk three times and run out, then repeat two more times!

new year’s day dip

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t ŷ hafan’s miracle mum Tŷ Hafan service-user makes history by becoming a mum.

When Danielle Morgan was born with transposition of the greater arteries, she was rushed into surgery for a major operation at six weeks old to try and save her life. Her family were told that her life-limiting condition meant she may not reach her first birthday, and to “be prepared” for the worst.

Now, 27 years later, Danielle from Port Talbot, has defied all expectation and has become the first ever life-limited service user at Tŷ Hafan to become a mum — something that we’re over the moon about at the hospice!

Danielle still has a life-limiting condition. She needs routine medication at specific times of the day to keep her heart condition as stable as possible, and even though she can live a ‘normal’ life like any other new mum, still needs to keep a close eye on her health.

Danielle explains: “Falling pregnant really did feel like a miracle milestone for me; it was something that I was never 100% certain would be able to happen with my condition. It was such a scary time, but nurses and doctors monitored me very closely throughout the pregnancy and thankfully there were no major issues that made it that different to anyone else’s.

“The fact that I’ve been able to give birth to the most healthy, beautiful boy is just life-changing. He’s had cardiac tests and he’s passed every one of them!

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“Despite loving being a mum, it is particularly tiring for me. I still have to be careful in day-to-day life because I get out breath very easily; even just walking to the car from my house can be a challenge some days.

“Every day is different for me with my condition, so I rely on my partner, Kane, to support me with the physical but also mental challenges that come with it to ensure baby Frankie always has the very best care and attention.

Kane is also severely deaf and needs an operation to help improve his hearing so we’ve really learnt to help each other overcome new challenges together.

“I feel quite special to be the first ever person who graduated from Tŷ Hafan to become a mum. I still have such a connection to the hospice because it was such a huge part of my life for 20 years. I’m still in regular contact with the staff and always will be. I feel so grateful that even all these years after graduating I’m still able to pick up the phone to them for advice and support.

“Once Frankie is a little older and I’m able to be away from him for a while, I’m due to go through some major heart surgery to help my condition. If all goes well it could be life-changing and could improve my condition significantly.

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Lynne Phelps, our Play and Therapies Lead, said: “When a young person reaches the age of 18 and graduates from our services, that alone is an incredible moment, let alone going on to have a healthy baby.

“We can’t help but feel so proud of Danielle. Her story is so inspirational and we feel so humbled that we were able to support her at such a pivotal, and at times, quite uncertain time in her life.

“We remember Danielle when she first came through the doors of Tŷ Hafan at the age of seven. She was one of the first children to come to Tŷ Hafan when we opened in 1998. Now in our 21st year of service, we can’t think of any better news than to hear that one of our first ever service user has become a mum.

“Tŷ Hafan still supports Danielle, despite having graduated from the hospice over 10 years ago. Helping young people transition into adulthood and into adult palliative care is a huge part of what we do, and we’ll continue supporting for as long as they need us.”

I’m sure you’ll join us in wishing Danielle, her partner and beautiful baby Frankie all the very best as they start their new venture together as a family!

P.S. how gorgeous is Frankie?!

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our news and stories from t ŷ hafan

sully friends of t ŷ hafan celebrate 16

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We’ve had some amazing fundraising stories throughout the years, but the longevity of some supporter’s commitment to the charity really reminds us just how much T ŷ Hafan means to the people of Wales.

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Sully Friends of T ŷ Hafan have been here since before the hospice foundations were even laid and they were instrumental in helping Suzanne Goodall fundraise and raise awareness of the charity all those years ago. To celebrate their 25th anniversary, they held a ball which was a perfect exclamation point on a quarter century’s worth of support. So we are going to hand over to Lynda Francis, Vice Chair of Sully Friends of T ŷ Hafan, to tell you about their journey.

While much of our work last year went into organising the ball, we never neglected our regular events throughout the year. We had three annual Quiz Nights which are always sell outs and we often have a waiting list for cancellations! There was also a Christmas Craft Fayre at The Old School Sully in early December. We couldn’t do all these things without the help of our families who get dragged along to our events to move furniture, sell raffle tickets, sweep up after the events and so on. So thanks to them all.

We first heard of Tŷ Hafan 25 years ago when Suzanne Goodall came to talk to our women’s group in the village. Suzanne shared her vision with us and we were blown away with what she believed we could do.

We all lead busy lives these days and one of the great things about belonging to Sully Friends is that we keep up friendships that go back to the beginning, meeting socially on a regular basis and working together for a common cause. Some of us also volunteer at Tŷ Hafan events such as the 10K events and marshalling at the Taff Trail. We always welcome new members to the group as they bring new ideas, skills and enthusiasm with them.

There was never any doubt in her mind that Tŷ Hafan would happen and, meeting in the pub later (where most of our meetings took place after that), we decided that we just had to get together and support her by helping her raise the funds to build this amazing place. Suzanne inspired us to set up Sully Friends of Tŷ Hafan and when we look back, we can’t believe how far Tŷ Hafan has come. It’s amazing!

So, last year was our 25th anniversary and we had a celebration.

All of us on the committee enjoy a good night out so it’s a bonus if we can raise extra funds while we’re having fun. Our charity ball was held in the Ricoh Suite at Cardiff City Football Club on Saturday 6 July and was a great night with lots going on and plenty of opportunity to get people onside (note the footy reference) to raise awareness of the great work at Tŷ Hafan and continue to raise funds.

Don’t forget: sullyfriends@hotmail.co.uk We share Suzanne’s vision and are privileged to be part of the many volunteers and groups that raise the funds that keep T ŷ Hafan delivering the best it can to its children and their families.

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cwtch

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

mr randall £2k weekly draw winner

tonik energy is t ŷ hafan green!

Every week Mr Randall from Neath puts a pound into the Crackerjackpot weekly draw to support Tŷ Hafan. After he was drawn as our weekly jackpot winner, we knocked on his door with his £2,000 winnings. His reaction when we presented him with the cheque was priceless! Here’s what he had to say:

Sharing values with our corporate supporters is a must for Tŷ Hafan and providing for the future by being innovative today is a value we strongly believe in. It’s our refurbishment project in a nutshell.

“You must be joking? I’ve never won anything before - I don’t know what to say!

“I put £26 every six months into Crackerjackpot which is only a pound a week. I signed up to support the charity, but it never occurred to me that I might actually win some cash. I’m gobsmacked.

“You couldn’t have knocked on my door at a better time because I’m currently trying to renovate my house. I’ve had to put a stop to the housework because I’ve got a really expensive job to do before I can go any further with the renovations. The fascia boards all around my windows are rotten and there’s been so much expense that it’s been leaving me in tears. I’ve not really known where to turn.

Tonik was founded on the belief there was a better way to do things – they have members instead of customers that are all part of a movement shaping their own clean energy future, helping them become switched on energy users. They provide 100% renewable electricity along with 10% sustainable green gas. They also provide the option to carbon offset your remainder fossil fuel by supporting inspiring projects in the biodiverse Kasigau Corridor of Kenya, a project that helps protect threatened forests and local wildlife, along with providing social, economic and environmental opportunities to rural communities, like funding for schools.

We’ve spent a lot of time over the last year or so focusing on our carbon footprint. Handcrafted by Tŷ Hafan is an upcycling project that allows volunteers to flex their creative muscles and creating something new out of something old, while learning about the charity. Our retail department, too, has a huge interest in sustainable fashion and we held a fantastic event in our Whitchurch store to promote recycling clothing in November, with hopefully more to come.

Both Tŷ Hafan and Tonik energy share a passion for investing in future generations - which is why we’re pleased to be working in partnership and help create lasting change and a brighter future for our hospice and the families that receive our much-needed support.

If you’re looking to go green and support T ŷ Hafan, get an energy quote today for greener energy from www.tonikenergy.com/ty-hafan. Help us make a world of difference to the lives of life-limited children and their families, both now and in the future.

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✂

“I can’t explain the relief I feel that I’m finally going to be able to sort my house...thank you so much.”

So we were delighted when green energy company, Tonik Energy, pledged to donate £50 towards our £1.5 million refurbishment target every time they had a new members go green and switch their energy supply with them.

spring/summer spring/summer 2020 2019

at this time of national emergency, we need your help now more than ever We urgently need your support so that we can help children and families who are particularly vulnerable at this time. We still need your help to make our hospice fit for the future while providing remote care in the community for the families we support in these unprecedented times.

Please show your support to our families…

I would like to make a gift of:

£25

£30

£60

£100

 Other £ ............................

Offi ce use only: <Campaign code>

Your details <Title> <Forename> <Surname> <Address 1>, <Address 2>, <Address 3>, <Town>, <Postcode>

<Donor No>

Increase your donation with Gift Aid I am a UK taxpayer and understand that if I pay less Income Tax and/or Capital Gains Tax than the amount of Gift Aid claimed on all my donations in that tax year it is my responsibility to pay any difference. This declaration also relates to all donations I have made to Tŷ Hafan in the past four years and all donations I make hereafter until I notify you otherwise

There is always something special happening at Tŷ Hafan that’s only possible Your payment thanks to the incredible support we receive from people like you.

I would like to pay by: Cheque

PO

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( Please make payable to Tŷ Haf a n)

If you’d like to hear the stories we couldn’tDebit fit in Cwtch each month, sign up to A Little Cwtch, our Or by: Visa Mastercard e-newsletter, by visiting www.tyhafan.org/stay-in-touch or by filling in your details below and ticking ........................................................................................................................................ the box, thenCardholder’s return this name form using our freepost address: Freepost RTBS-YCZU-JZSJ, Fundraising, Hayes Road, Sully CF64 5XX. Address of cardholder (if differentTŷ to Hafan, above) ..........................................................................................

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Tŷ Hafan - the hospice for children in Wales. Hayes Road, Sully, CF64 5XX Registered Charity No: 1047912. Tŷ Hafan® is a registered trade mark.

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at this time of national emergency

we need your help now more than ever

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

During these unprecedented times, we want to send our best wishes to you all and hope that you, your family and your friends are safe and well.

The families we support will always be our priority. We are committed to maintaining as many of our services as possible during this time by adapting the way we work, including offering therapy sessions online, and we’re delighted that these sessions have been resonating so well.

However, we are facing financially challenging times. Over the course of the year, we expect to lose over £2million as a result of our community fundraising and large participant events being cancelled, as well as the closure of our shops, and this loss could yet increase if the outbreak continues beyond June.

As a charity that relies heavily on income from public support, we need your help now more than ever to make sure we can continue being here for the families who so desperately need us.

We know this is an extremely difficult time for everyone, but if you’re in a position to support us with a donation, it would be greatly appreciated. If you’ve already donated to us, thank you so much. Your kindness will make a world difference to the life-limited children and families we support now and in the future.

Thank you so much for all you do and stay safe. We’re thinking of you.

From all of us at Tŷ Hafan

How to donate If you’d like to make a donation, please fill in the donation form overleaf and send it back to us, visit www.tyhafan.org or, if you’d like to donate over the phone, call 02920 532 255. Diolch.

Please note - As our head office staff adjust to home working, it may take us a little longer to process donation and send out letters of thanks.

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Tŷ Hafan - the hospice for children in Wales. Hayes Road, Sully, CF64 5XX Registered Charity No: 1047912. Tyˆ Hafan® is a registered trade mark.