Tŷ Hafan Cwtch Spring Summer 2021

cwtch

newsletter spring/summer 2021

our news and stories from tŷ hafan

looking forward inside 1 Celebrating

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y

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e a r s

harley's story p.5

fit for future update p.8

fundraising news p.14

cwtch

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

welcome Welcome to the Spring/Summer edition of Cwtch!

This year might have started the same way as last year ended, but dare we say that with the vaccination programme well underway and the effort put in by everyone to help lower the R number, there are many reasons to be hopeful in the coming months.

What last year showed us beyond anything else is just how committed to supporting Tŷ Hafan the people of Wales are.

As we’ve said elsewhere, the closure of our shops (including six permanently) and the postponement or cancellation of all our fundraising events resulted in severe financial losses to the charity. We had to change our plans for income generation quite drastically and at short notice in a year where our essential refurbishment project was supposed to be our main focus.

We have had to ask more of you than ever before.

Through one off donations, regular giving, supporting our lottery, taking on virtual fundraising activities, engaging in corporate partnerships and so much more, the people of Wales have been there for us despite the unprecedented challenges we have all faced since the start of the pandemic.

Outside of the doom and gloom of 2020, there was an awful lot of good for us to look back on. New ways to do things, a new look hospice really taking shape, and most of all, incredible support from people who love the charity and what we do.

We hope you enjoy this edition of Cwtch. The pages are full of great stories from the last six months, so take a little time out and see how you’ve helped us over this most difficult of years.

contents welcome................................................................................................02 the last year............................................................................................03 stories from the den............................................................................04 harley’s story..........................................................................................05 fit for future update..............................................................................08 our events in a virtual world...............................................................10 à bientôt paris.........................................................................................11 tŷ hafan by numbers...........................................................................12 fundraising..............................................................................................14 remembering siôn...............................................................................15

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With families at home, our community services have stayed in touch by video

spring/summer 2019 2021

the last year This time last year, we couldn’t possibly have predicted the challenges we would face over 2020. The pandemic took us all by surprise, changing how we all lived our day to day lives almost overnight.

At Tŷ Hafan, we had to rapidly review how we delivered our services and find new ways to be there for children and families when we couldn’t be side by side.

Although children and families were shielding for much of the year, we have continued to provide emergency care at the hospice as well as end-of-life care. This has brought an extra layer of support when it has been needed most, and we are so pleased to have made a difference at these difficult times. Alongside keeping our services running, we have been continuing our refurbishment so the hospice will be ready to welcome more children and families when it is safe to do so.

With families at home, our community services have stayed in touch by video, providing support for families and activities for children in our uniquely Tŷ Hafan way – we’re getting through this together but miss each other.

Last year we completed a vital piece of work with our north Walian counterparts and the Welsh arm of Hope House, Tŷ Gobaith – it was entirely focused on understanding what families want and need from us. We called our report ‘Family Voices’.

The report, based on a survey of views from families using or who have used hospice services, provides a vital voice in understanding what these needs are. These are families who do not just want their voices heard, they need their voices heard.

These families see hospice support as their “lifeline” – somewhere they turn to when they need help.

We had an amazing response with over 133 respondents. They told us just how vital our services are, but also how desperate families and young people are for more of what we do. Respite care is for coping and wellbeing but they also spoke of needing more.

We know that our support is more important than ever, and this report is essential in helping us plan for the future. Thank you to everyone who took the time to share their views and help us shape the future of children’s hospice support in Wales.

To read the full Family Voices report, please visit: tyhafan.org/ familyvoices

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our news and stories from t ŷ hafan

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stories from the den Every area of Tŷ Hafan could be featured in the “Stories from…” section, but our teenagers’ area (or the Den) could fill a whole issue of Cwtch by itself. If these walls could talk!

Independence is something we all take for granted; although perhaps the last 12 months of lockdown have made us all realise quite how precious our independence really is. For the young adults and teenagers who use Tŷ Hafan, issues around their ability to be independent, are nothing new as many of the services and facilities designed for their age group often aren’t suitable for young people who have more complex needs. Our founder, Suzanne Goodall felt passionately about this and requested that her final gift to Tŷ Hafan be put towards providing continued support for dedicated teenage services.

The Den is a very important part of the hospice. It’s a place where teens can spend time being teens, somewhere they can go to escape from parents or younger children and be themselves. They can spend time with others of their age in a relaxed environment tailored to their needs.

The Den allows visitors to just hang out, whether that’s with other Tŷ Hafan teens, siblings, friends or sometimes even the odd famous face!

Tomas Martin remembers taking on the late Peter Whittingham who played midfield for Cardiff City, at FIFA on the PlayStation while his teammates watched on. Sadly, Tomas can’t remember who won the game (too modest perhaps), but he always loved spending time in the Den, saying: “It’s a great place for me and my friends to hang out, past and present.”

Twenty six year old Amy Claire Davies has fond memories of the Den. She wants to make sure that it continues to be an important part of Tŷ Hafan for the next generation.

“I used Tŷ Hafan all the way through my teenage years and they were absolutely amazing. Completely invaluable and irreplaceable, not just for me as a palliative young person, but for my family and friends too.

“Tŷ Hafan is currently having a big renovation and we need to make the Den a really awesome place. Now admittedly, there probably

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will be some disagreements on decoration. When I was there, there used to be a lot of stuff like moving posters around because the boys didn’t want Twilight and I didn’t want Megan Fox, but, you know, we worked it out in the end!

“The Den is such a big part of Tŷ Hafan and we need to make sure it’s a really amazing place for all the teenagers and young people that will come after me and my friends.”

An anonymous Tŷ Hafan teen said: “I love the Den at Tŷ Hafan, it’s somewhere I can just go and hang out, play console games and pretend I am just like any other teenager with no medical equipment surrounding me or well-meaning carers (or mum!) checking on me all the time. I can just be! Sometimes that’s the most powerful feeling and that is what the Den gives me.”

spring/summer 2021

"Bailey, Harley’s sister, is four now and she is great with him. She absolutely doesn’t get enough credit for what she does for him, and what she has to deal with."

harley's story Something that the children who come to Tŷ Hafan have in common is that they are all unique, each one truly is one in a million. Yes, they have life-limiting or life-threatening conditions, but these conditions, no matter how rare, don’t define them, and it’s their individual personalities that shine through.

Harley, a ‘cheeky chops’ seven-year-old from Llanelli, is definitely one of a kind. He had his first operation on a cystic lung while he was still inside his mum Becca’s tummy. At two days old, he had open surgery to remove most of his left lung. A week later his other lung collapsed then they found a hole in his heart. He has lived his whole life with multiple health issues from the need to be tube fed to severe seizures and developmental delay.

Harley has a number of genetic abnormalities and has been diagnosed with Adenylosuccinase deficiency (ADSL), with symptoms including autistic behaviours, epilepsy, feeding difficulties, hyper mobility and hypotonia (low muscle tone).

ADSL is a progressive disorder and Harley’s condition has developed over time. But while he is at high risk of sudden death through epilepsy, Becca was never sure that they were eligible for support from Tŷ Hafan as she’s never thought of Harley as life limited. However, it was another Tŷ Hafan parent she knew

who suggested that they come to see us, especially as symptom management is provided at the hospice.

The timing was good as the family were going through a very difficult period with Harley, who was in a lot of pain due to stomach issues, vomiting and reflux. Doctors had yet to find the right medication balance which meant he was often very drowsy, but still had real difficulty sleeping. His autistic tendencies also meant that he would lash out towards his mum, dad and sister Bailey, and he had also been self-harming from a very young age by clawing at and punching himself.

So, Becca and Harley came for their first visit in summer 2020 amid all the disruption of the Covid-19 pandemic. They were at a crossroads with carers as they needed to shield, so with nobody able to babysit or support them, the whole family was at breaking point.

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our news and stories from t ŷ hafan

“When I look at him, I wonder how long we will have you for, but I don’t want that fear to rob us of today.”

Visiting Tŷ Hafan meant that Becca could stay with Harley (she wasn’t ready to leave him with others yet) but would have the assistance and support of the nurses and care teams. It also meant that, for five nights, Harley was observed, allowing staff to see exactly how he was faring with his medications and routines.

Becca said: “I never thought Tŷ Hafan was right for us because I thought it was for end of life only, and that wasn’t us. But when we went to the hospice to stay, it gave the doctors a chance to see what was going on. Harley didn’t eat or drink for a week, but it meant that they knew what they were dealing with and it helped us get the referral we needed.

“He is incredibly shy, but Harley is very funny and a typical boy really. He can be so direct with you; he’ll always say what he really thinks. He loves to play Roblox and on his X-Box, they are his favourites, but he won’t go to bed without giving Elmo a kiss every night. He loves Christmas time, obviously because of Santa, and he gets so excited when he sees him, but mostly because of the lights. He loves lights. We try to go to Blackpool every year to see the lights there, but we couldn’t this time because of Covid. He loves trams and buses, arcades with the sounds and colours.

“When we go for walks, he gives us a running commentary and he gets really into things. He’s so observant and will spot all the NHS rainbows and point each and every one out. Same with dogs and other animals, he loves to tell us about the things he spots.

“We have good and bad days. He loves to sing and dance; he would sing Mariah Carey all the time over Christmas. But it’s been really hard for us all. He can be quite violent towards us and now he is seven and he is getting bigger, it can be quite hard, even for my husband. It takes its toll because I sleep in with Harley, so me and my husband sleep separately.

“Bailey, Harley’s sister, is four now and she is great with him. She absolutely doesn’t get enough credit for what she does for him, and what she has to deal with. Harley needs to use a feeding tube and she could get quite distressed seeing him struggling, she worries that he is being hurt. We had to sit her down and talk her through it, so she knows how important it is. But she also “gets” him, she understands that he needs our attention a lot of the time and they get on so well. It’s so hard to spend quality time with just her as Harley needs so much attention. We try to make sure there is time just for her, but it might just be going to school or her groups where she gets our full attention.”

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“I spoke to her teacher about it because I’m so proud of how she deals with everything and they didn’t realise, because Harley goes to a different school and she just takes it in her stride, but she deserves so much credit. I think the sibling support at Tŷ Hafan will be great for her.”

Only Harley and Becca have been to Tŷ Hafan so far, but the whole family is excited about being able to visit and experience it for themselves, hopefully in the near future.

In the meantime, family support worker Kirsty is on hand to check in and provide support whenever needed: “Kirsty is always available at the end of the phone or on Zoom if we need her and she checks in every so often to make sure we are doing ok. Covid is a prison for us really. Harley can’t even go outside like he could before, but it makes us worried to as well. We’ve really liked following what they have been putting online for us. When we visited the hospice, we were watching The Greatest Showman, one of Harley’s favourites. Heather came out with her guitar and said: ‘I know that song’ and serenaded him.

He was fascinated and sang and played along. Now when he sees her on Facebook, he is captivated by her. The others too, but Heather is his favourite.

“But people don’t get to see this side of him because he is so shy, even at school. So I try to take as many videos as I can of him to show people the real Harley.

“We have too much to pack to go away for long, so holidays are impossible. Going to Tŷ Hafan is different because they are used to it and it’s normal for them. It makes it easy to fit in there. You can talk to people about things, but to meet other parents in the same position as you is good, as you feel less selfconscious with a Tŷ Hafan group.

“All the staff were amazing. I wasn’t ready to leave Harley, I’m still not, so I stayed with him the whole time, but I saw other children and was amazed at how the staff were with the kids.

I’ve never met such nice people. The one time I left him was to go for a shower for an hour. I’ve never done that before, but I felt able to as I knew he was being looked after.

“I don’t like ‘terminal’ because that’s not where we are yet. Our doctor is very straight talking, which I actually like, but I’m not sure if he thinks I understand what he is telling me sometimes with his epilepsy. I do, but that’s not where we are yet.

“When I look at him, I wonder how long we will have you for, but I don’t want that fear to rob us of today.”

Tŷ Hafan is very different to what people often think of when they hear the word ‘hospice’. It has been described as “a club that nobody wants to be part of” but it’s a club there to provide the support its members needs.

Tŷ Hafan is reliant on the support and generosity of the people of Wales so that we can continue to be this source of comfort and care to the families who need us.

spring/summer 2021

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

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our news and stories from t ŷ hafan

029 2053 2199

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fit for future update 2020 was supposed to be the year of refurbishment for Tŷ Hafan. Even a global pandemic could not stop this happening, albeit in not quite the way we had originally envisaged.

Our hospice has been well-loved during the past two decades and you can’t love something without it showing. We’ve seen more than 1,000 children and their families join the Tŷ Hafan family and, although not all of them will have visited the hospice, their presence is felt within its walls every day.

The new therapy room will maximise the benefits of complementary therapies for our children as well as their mums, dads and their siblings. The calming effects of these therapies in the tailor-made environment will help to reduce stress, relieve anxiety and maximise the benefits of the respite stay.

Despite the Covid-19-sized ‘speed bump’ having an impact on the project’s progress, we’ve worked incredibly hard with contractors and suppliers to get to where we are today. Our supporters have been vital in us continuing this forward momentum, so we owe you all a huge debt of gratitude.

We want our families to feel at home at Tŷ Hafan so that they can make the most of the time they have together and the new bedrooms, kitchen and living room will really allow them to enjoy this downtime, knowing that their child is being well cared for by our wonderful care team.

So how is our ‘fit for the future’ refurbishment going?

Work is still ongoing in the heart of the hospice, our kitchen and dining area. It’s always a bustling hive of activity and we can’t wait to see how it turns out.

Since our last walk through, the children’s bedrooms have been completed. These newly designed rooms will allow the children to feel comfortable, safe and at-home while they stay. We decorate the rooms, just like their bedrooms at home. The features are all state-of-the-art to make sure that the rooms are as fit-for-purpose as they are comfortable.

Upstairs, the family living room is all about providing a relaxed atmosphere where families can spend quiet time on their own, but with support never far away. Respite is one of the most important services we can provide our families and this space will be their home-from-home while they are with us. This is where friendships between families can be forged, where they can discuss shared experiences and realise they aren’t alone. But if peace and quiet is what the family needs, they can find that here too.

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Our founder, Suzanne Goodall, was particularly interested in the wellbeing of our teenagers and young adults, so we want to make sure the refurbished teenage area we call the Den is something she would have been proud of. No matter the age of the child or young person, their needs vary considerably, but the Den will let teenagers be teenagers, away from the younger children.

We wouldn’t have come this far without you and we are almost there. We can’t wait to be able to share the hospice in all its finished glory with you just as soon as we can.

spring/summer 2021

We want our families to feel at home at Tŷ Hafan so they can make the most of the time they have together.

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our news and stories from t ŷ hafan

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our events in a virtual world We won’t lie to you; we are missing events.

Real, in-person, live events. We miss seeing you on the stalls of our Family Fun Day, we miss seeing you walking the final few steps down Pen-Y-Fan, the third of three mountains you’ve just climbed for Tŷ Hafan.

We miss just seeing you.

making use of your Christmas jumpers Whether you ran 100 metres or 100 miles during December, thank you for taking part in our Christmas Jumper Jog. It was a frosty month, but you should be very proud of yourselves, we sure are.

We wanted to make sure your Christmas jumper got a proper workout this year and you helped us raise money during the festive period on our latest virtual challenge. And if you ask us, mince pies just taste better when you’ve really earned them and earn them you really did!

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Having said that we’ve had a huge amount of fun over the last few months seeing your amazing virtual fundraising efforts, whether that’s with us for Marathon in May, our quizzes or the more recent Christmas Jumper jog, or challenges you’ve come up with to raise money for us. They’ve been great for keeping our bodies moving, escaping the same four walls and relaxing the mind. So, for as long as we have to, we’ll be there with fun and inclusive virtual activities to get us through lockdown.

For more information on our events, visit tyhafan.org/events

vir tua l

spring/summer 2021

à bientôt paris

Ride to the Rugby snuck in just before lockdown last year and saw nearly 50 riders brave wintery conditions to get to Dublin in time for Wales to take on Ireland in the Six Nations.

This year, we were due to repeat our 2019 trip and head back to Paris: 320 miles through three countries in March. We all know the story by now, but rather than sit at home and wait, we thought we could invite a few more people along and do a virtual version instead.

The concept is simple, in the weeks leading up to the Wales France game in Paris on 20 March, cyclists will bike the equivalent distance between the Principality Stadium in Cardiff and the Stade de France in Paris. That’s 320 miles! Now, participants don’t have to worry too much about recreating the ferry ride from Portsmouth to Le Havre, and they can do the ride any way they like – on roads and cycle paths, on their turbo trainer or on their exercise bike. They can also make it a team effort.

Tŷ Hafan dad and Ride to the Rugby stalwart, James Meacham, tells us why he is getting back on the saddle for the third year running: “I first heard of Ride to the Rugby while we were staying at Tŷ Hafan with Thomas, sometime in 2018.

I thought it would be a great challenge and convinced my mate and my cousin it was a good idea.

“So we all bought bikes and started training. It soon became apparent that road cycling is hard work! A few training rides with the wider team, lots of winter miles, and January 2019 soon arrived. The buzz as the other 39 cyclists and I departed from Cardiff was something else. The weather was really against us on that day, but we ploughed on as a team and got there. The rides are so well organised both on and off the road that it’s a real feel-good adventure!

“The atmosphere was electric, rugby fans cheering us on as we rode the same cobbles as the Tour de France – that feeling will stay with me for a long time. Video calling my wife Sarah and son Thomas in the hospice brought a few tears.

“So based on that wonderful experience, it didn’t take much for me to sign up for Cardiff to Dublin – Ride to the Rugby 2020.

This time we had an unofficial “Team Thomas” of about ten participants, rather than three the year before. We lined up in Cardiff and headed west… who knew west Wales was so hilly!

Meeting in a pub outside Dublin, sharing a beer, then cycling to the Aviva with a big group of mates is such an awesome feeling, it doesn’t fade.

“That trip was different on an emotional level because seven months before, Thomas passed away peacefully in the hospice, so my reasons for doing it were slightly different – from being a user of Tŷ Hafan, to wanting to ensure they can continue to support families like mine. The highlight of that trip was being asked if we’d be ok with the team captains organising a “Thomas Meacham” award and asking me to present it to the “rider’s rider” of the tour. “It was a very special trip for lots of reasons.”

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cwtch

our news and stories from t ŷ hafan

children supported

6 years

9 years

average age of admission in the last 12 months

average age in care

0-3 yrs

17 yrs

11-16 yrs

13% 12%

42% 28%

current age of children in care 12

www.tyhafan.org

our ye num

261

5%

029 2053 2199

6-10 yrs

4-5 yrs

spring/summer 2021

ar inin ear bers mbers

1,016 1,016 children children supported supported

3,800 3,800 340 340 family members family members supported supported

children died children died

running costs of care 2019/20 running costs of care 2019/20

annual running 80p in every pound of income costs ofannual care running contributes Costs incurred 80ptoincare. every pound of income 80p costs of carein the management of care. commercial contributes to Costs incurred

£4.6 £4.6 million

activitiesin are theexcluded. management of commercial activities are excluded.

million

80p

20p

20p

£ 1£ 21 ,25, 55 45 4

daily cost of care daily cost of care

* Stats correct to October 2020 13 * Stats correct to October 2020

cwtch

our news and stories from t ŷ hafan

029 2053 2199

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fundraising keeping fit with team apêlelain After hearing about Tŷ Hafan’s fit for the future refurbishment appeal and the final push to get over the finishing line, Bridget decided to challenge herself and ‘Team ApêlElain’ supporters to her ‘Five days of Fitness’ challenge over the February half term.

Tŷ Hafan mum, Bridget, and her ten-year-old daughter Elain have been part of the Tŷ Hafan family for the past ten years. Elain has a serious heart condition and Bridget set up a fundraising appeal called ‘Team ApêlElain’ in 2011 to raise money for charities that had been there to support Elain and continue to do so today. So far, they’ve raised over £40,000 for Tŷ Hafan!

"In 2010, Elain was born with a serious heart condition called Pulmonary Atresia, VSD and MAPCAs along with 22q11.2 Deletion Syndrome. Most of the first year of her life was spent in hospital, undergoing surgeries and three months fighting for her life in ICU. " Following a self-referral to Tŷ Hafan, Elain had her first short break to the hospice in May 2011. Over the past ten years, the hospice has become our second home, our escape and our extended family.

We never allowed ourselves to believe that we would ever be in the position of being able to look back over ten years of Elain’s life. In 2013, we were told by Elain’s cardiac team that all attempts to ‘fix’ her heart had failed and that we had very few options left.

We prepared to make the most of the time she had left. A year later, much to everyone’s surprise, rather than deteriorating, she appeared to be thriving! " After some investigation, it was suggested to us by Elain’s cardiac team that her heart arteries had grown enough for them to attempt a partial repair. It would not result in making her ‘better’ or give her a normal heart/lung circulation, but it might buy her some more time. In April 2015, Elain underwent her last major heart surgery.

The aim was simple, to continue to prolong her life for as long as possible, whilst also giving her the best quality of life possible given the limitations of her complex anatomy. " Almost six years later, the ‘last ditch’ surgery has more than delivered, surpassing all our expectations. Elain has blossomed and thrived on so many levels. After being told she would never eat independently, she now has been responsible for 100% of her

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am allenge herself and ‘Te Bridget decided to ch ess’ Fitn of ys da e ‘Fiv r he to ApêlElain’ supporters m. ter ruary half challenge over the Feb

own calorie intake for over two years. She still manages to attend school full time and in 2019, thanks to a referral from Tŷ Hafan family support, she took her first trip abroad to Disneyland Paris with the Magic Moments charity!"

"The challenge aimed to get everyone fit and active whilst also helping the hospice refurbishment over that finishing line. One of the last areas of the refurbishment to be completed is the Den for teenagers to relax and feel like a teenager. Elain is fast becoming a teenager, so we feel that these special, age-appropriate areas and provisions are going to mean a great deal to us as a family in the very near future."

Elain has very little options left for any future medical intervention and Bridget and her family still do not know what the future holds, however, Tŷ Hafan has always been a key source of support for Elain and the family and will continue to do so in the future.

spring/summer 2021

outrunning january target out of the The boys blew their £100 t count, so a las at water, raising £3,415 tulations all. gra con and you massive thank

Three friends, Lewis, 13, and Ben and Ollie, both 14, from Caerphilly, have previously raised over £3,000 for Tŷ Hafan by wearing shorts to school for a whole year. This year, they stepped up their game by running 100km over the course of January!

Rather than play video games all lockdown, they wanted to start running and fundraise for Tŷ Hafan. They wanted to better themselves as individuals and “help those that are less fortunate”.

The boys absolutely blew their £100 target out of the water, raising £3,415 at last count.

remembering siôn Tŷ Hafan is a family and like any family, it extends far and wide. So many people from all over Wales and beyond have such a strong connection to the charity and it’s this sense of support within our community that makes Tŷ Hafan what it is.

While not a service user himself, Siôn Mullane will always be part of Tŷ Hafan’s extended family thanks to his close friendship forged at Cubs with our very own Tom Martin. Regular followers may know Tom from his family’s help with our refurbishment campaign, or his success as a Welsh Boccia international.

Another of his best friends, Michael Rogers, came to stay at Tŷ Hafan for many years too, so the charity always had a special hold on him.

In the words of Siôn’s mum, Delyth, he had a “great zest for life” that was sadly cut short due to his suffering with his mental health when he took his own life last year. His childhood friendship with Tom and Michael undoubtedly helped to develop his massive affinity with Tŷ Hafan and he was always so passionate about our work. He was a strong supporter of what we do for children, young people and their families.

Siôn (left) an d Tomas (righ t) Remembran ce is at the he ar t the importanc of Tŷ Hafan an e of making d we know your mark on matter the le this world, no ngth of time you are here that spirit an .

Siô d left his mar n embodied k on everyone who met him .

Siôn’s family and friends have donated in his memory and the proceeds were split between Mind and Tŷ Hafan, with Tŷ Hafan receiving more than £4,000.

Delyth said: “Siôn would be so happy to know the great work was continuing and that friends and family had donated in his behalf.” She says she would very much like to thank everyone for their support for the charities that meant so much to her son and his extended family of friends.”

Stay up-to-date with everything Tŷ Hafan at: tyhafan.org/ our-blog

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Gifts in wills fund 25% of our care each year and allow us to plan for the future Find out how you can include a gift in your will and about our will writing services with a free information pack. Request a pack today by: visiting tyhafan.org/gift-in-a-will calling our team on 029 2053 2265 or emailing legacy@tyhafan.org

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