Tŷ Hafan Cwtch autumn/winter 2020 by Ty Hafan

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newsletter autumn/winter 2020

our news and stories from tyĚ&#x201A; hafan

our lockdown experience inside 1 Celebrating

e a r s

stories from lockdown p.4

diagnosed with awesomeness p.10

this is me... king cai p.18

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welcome Welcome to the Autumn/Winter edition of Cwtch! This year is likely to live long in all of our memories as one that left an indelible mark on our lives. The horrific Australian bush fires in January seem like a lifetime ago when we consider what has followed and not one of us has been able to escape the major global events of 2020. So, just like you, Tŷ Hafan has had a considerably different year to what we had planned! To start the year, we’d finally managed to get our exciting and vital refurbishment project underway before coming to an abrupt stop in April. While work was postponed to ensure the project could be Covid secure, we have since been able to continue through the phases and are very excited by the developments and will share them as they happen. We hope you were able to read about the refurbishment in the last edition of Cwtch, although distribution was less widespread than normal (we still have copies as well as electronic versions available). In this edition of Cwtch, we will take a look back on what has been an incredibly trying period for the charity. It's also one that has highlighted the importance of the work we do for so many families all over the country, as well as the amazing lengths our supporters will go to, to make sure we can continue to be there for our families. We hope you enjoy this edition and it gives you an interesting glimpse of life behind the scenes at Tŷŷ Hafan during this difficult time. It’s been a surreal few months and we’ve had to adapt, but it has also allowed us to re-engage with families who we haven’t seen for a while. We miss the hustle and bustle of the hospice and the enthusiasm on display at our events, so we can’t wait until we can get a little closer to normal. But for now, we have plenty of positives to look back on over the last few months and thank you for being here with us.

contents welcome.............................................................................................................02 continuing her legacy......................................................................................03 stories from lockdown.....................................................................................04 specialist care into the heart of family homes...........................................06 sad to say goodbye ........................................................................................08 diagnosed with awesomeness ...................................................................10 hrh patronage extension.................................................................................14 leaving a gift looks after tomorrow................................................................15 events in isolation...............................................................................................16 this is me… king cai..........................................................................................18 supporting positive mental wellbeing with play........................................19 lockdown fundraising stories........................................................................20

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continuing her legacy The massive upheaval of the last six months has shown the world just how connected we all are and reminded us of our reliance on one another for so much of what we take for granted. From Tŷ Hafan’s point of view, the Covid crisis has highlighted what we already knew – we would be nothing without our supporters. We’ve never lost sight of this fact though since the very beginning when Suzanne Goodall made her decision to create the first hospice for children in Wales. 21 years later, Tŷ Hafan, Suzanne’s gift to the people of Wales, has left a lasting legacy for which she will be remembered for many generations to come. It is a legacy that Wales can be proud of, having been responsible for caring for over 800 families since opening in 1999. But Suzanne couldn’t have done what she did without your support, and we wouldn’t be able to continue to do what we do without you and the generous support of the people of Wales. The backing we have had, both financial and in kind, especially throughout the crisis, has been a lifeline for the charity and we cannot thank you enough. Regular Cwtch readers and Tŷ Hafan supporters will know that Suzanne sadly died in 2017 at the age of 91. Having remained a true friend to Tŷ Hafan right up until her death, she was keen to make sure of the long-term security of the charity long after she was gone. Tŷ Hafan looks after children not expected to live until adulthood, supporting them, their siblings and their families, from birth until 18 years old, after which young adults must transition to adult services. Thanks to medical advancement, some children live beyond that birthday. However, as they get older, even before you consider the huge variety of conditions that these children have, their needs change, whether that is physical, mental, emotional

or spiritual. The needs of these older children, for whom there is not a ‘one size fits all’ solution, were very close to her heart. Extremely keen to help us develop our services for this age group, Suzanne’s gift in her will, her final generous legacy, was gifted for the purposes of supporting this special group. In her memory, our Trustees sponsored a Royal College of Nursing Award named after her, the Suzanne Goodall Paediatric Palliative Care Nursing Award. Now in its fourth year, and independently adjudicated, Tŷ Hafan is delighted that two of the three winners so far have been Tŷ Hafan nurses. Suzanne’s family was keen that she would always be part of the hospice so in a quiet, private ceremony, we scattered her ashes in the memorial garden with the backdrop of the lovely Birdsong memorial playing. After a very wet and windy weekend, the sun came out long enough for the family to spend some quiet reflection time in the garden – they felt it was Suzanne sending a final message to say she was happy in her final resting place. We know how proud her family is of all that Suzanne achieved in her life and they were particularly moved by seeing the reality of her vision to create a haven for children and families at the most unbearable of times. They have promised to come back to visit us after our major refurbishment to see how Suzanne’s amazing legacy continues to grow.

Tŷ Hafan was her gift to the people of Wales, her legacy that she will be remembered for many generations to come.

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stories from lockdown Your support throughout the coronavirus pandemic has meant the world to the families we look after. It’s meant that we can stay in touch and make sure they know that they aren’t alone, while still providing services that are vital to the wellbeing of the whole family. As the world starts to reopen, these families must continue to be careful. But if you thought that this would stop them from showing us their support, you couldn’t be more wrong.

Vanessa Davies from Swansea, whose daughter Amelia (13) suffers with uncontrolled epilepsy which means medication cannot stop her seizures, explains why the family wanted to go that extra mile. “Tŷ Hafan took us under their angel wings back in the summer of 2018 and have since been providing Amelia, and us, with beautiful breaks away from home. “She’s recently been fitted with a pacemaker to help her with her seizures and we’ve already seen life changing results. Her seizures have now reduced from almost one a day to around four a month. It’s made such a difference to her energy levels and her happiness – she now laughs every day.” Thanks to the improvements to her condition, Amelia set off on the epic seven hour long 10-mile walk from Swansea’s Civic Centre along the waterfront to the pier and back again with her mum and grandma at her side. To date she has raised almost £1,500 for Tŷ Hafan. Vanessa added: “The play workers have been amazing while we’ve been in lockdown; they’ve delivered virtual music, story time and play sessions for Amelia at home. Tŷ Hafan has been our lifeline and the teams have been with us every step of the way through this crisis.”

"Tŷ Hafan has been our lifeline and the teams have been with us every step of the way through this crisis.”

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Children taking extra shielding precautions have also clubbed together by creating bright and colourful posters in support of Tŷ Hafan to get those in their local community behind the emergency appeal.

Elain James (ten), from Aberystwyth, who suffers with a genetic disorder has also bravely taken on an isolation challenge with her mum in support of her hospice. Elain’s mum, Bridget Harpwood, pushed Elain’s buggy 26.2 miles, the equivalent of a marathon, and has raised almost £7,000 for Tŷ Hafan with the help of Elain’s local fundraising team ‘ApêlElain’. Bridget explained, “Pushing that buggy up hills and on and off kerbs is one of the hardest things I’ve ever done. It weighs about 60 kilos. But it’s been a brilliant experience – and Elain’s always loved going in the buggy.” Elain’s disorder has caused a life-limiting heart condition, global development delay, autism, an impaired immune system and low muscle tone which also means that she struggles to walk for long periods of time. “Tŷ Hafan holds an incredibly special place in our hearts and will continue to do so throughout Elain’s life.” Bridget added, “We are proud to contribute something back to help the hospice at this incredibly difficult time for them.” Children taking extra shielding precautions also clubbed together by creating bright and colourful posters in support of Tŷ Hafan to get those in their local community behind the emergency appeal. These amazing children and their families really capture the spirit of Tŷ Hafan and, regardless of the difficulties they face every day (never more so than now), show such an inspiring commitment to the charity and shows us how important Tŷ Hafan is to them.

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caring through the crisis Covid-19 highlighted how vulnerable we can all be, but what about those who fall into the vulnerable category to begin with? We had to act quickly to make sure that families felt as supported as possible, whether we could be with them in person or not. Now, after many months of self-isolation and shielding, life continues to be uncertain for many Tŷ Hafan families. When lockdown struck, our specialist teams had to be quick to come up with new ways to make sure families could still get the support they needed.

families time off from providing care around the clock. We found that in most cases families had already made the decision to say no to a stay themselves, but we could sense how anxious they felt.

Our immediate response to the outbreak was to balance providing care with keeping families safe. This meant that we continued to make hospice-based care available for the children and families who needed it most – those needing crisis care, symptom control, or end-of-life care. We also wanted to do all that we could to relieve pressure on our NHS colleagues. So while the hospice couldn’t play host to activities like our Easter bonnet parade or our famous Children’s Hospice Week party, it remained a vital part of our service during lockdown.

Putting children, young people and families first is what we do, so we set about finding new ways to provide our essential lifeline of support…

We took the difficult decision to pause short break stays at the hospice – we knew how important these stays were in allowing

As well as our usual 24/7 access to phone support, including clinical support for families, we made sure that all families were contacted by the team to ensure they could get access to the help they needed. In the early days, things felt frightening and sometimes overwhelming, so we were a listening ear. We helped with practical stuff like getting groceries or medicine too. Getting our teams set up with the right technology early meant we could contact families via video and seeing the friendly and familiar smiles of our team made a big difference. Our family support, play and therapies showed how agile and flexible they could be – and came up with new ways of making their support available every day. Given the challenge of not being able to visit families at home or invite them into the hospice building for play and therapy in the same way that we have in the past, the team has had to do things differently and are reaching into the heart of family homes across Wales.. We have daily videos with sessions from a range of our play and therapies team. From sing-along Makaton with Josie to calming story massage with Katie, the team has found hidden performing talents they didn’t know existed. Play therapy and music therapy sessions continue to be delivered online and our active Facebook groups ensure a steady flow of important and useful information is easy to access for families. Throughout, we’ve done all we can to ensure we are always there. Even now, the situation is still changing. Rest assured, our care teams are working hard to make sure our services are available, safe, and always heartfelt, and they look forward to seeing families soon.

We will find new ways to provide this essential lifeline of support

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sad to say goodbye Tŷ Hafan is important to people all over Wales and it’s so important that we are part of the community from Abergavenny to Aberystwyth and Penarth to Powys and beyond. Our shops, then, are so important in giving us that presence in areas a bit further afield and have contributed over £2.5 million towards care since 2000. Families who use Tŷ Hafan have opened their new local store for us and our staff love to talk about the charity no matter where they are from. So the enforced closure from April to August was a massive blow to Tŷ Hafan.

“We’ve faced significant fundraising challenges over the last few months and, as a result, are having to make difficult decisions. Tŷ Hafan relies heavily on donations to keep its doors open, so now, more than ever, we need to spend the publicly fundraised money wisely and prioritise delivering expert paediatric palliative care to those who need us.

We are delighted that the majority of the shops have now reopened, but it is with a heavy heart that we have had to make the difficult decision to close six of our shops due to trading challenges posed by the coronavirus pandemic.

“We are so proud of what our shops have achieved, and the money raised is testament to the wonderful community efforts. It’s not a final farewell from us and we would love to return if circumstances allow in the future. In the meantime, we’ll be working on ways in which we can continue to be part of each of the communities for years to come.”

“Tŷ Hafan sends a heartfelt thank you to everyone who has supported, donated and volunteered at our much-loved shops over the last 21 years” said Tŷ Hafan’s director of retail and fundraising, Julian Hall, after we announced we will be closing shops in Merthyr, Bridgend, Maesteg, Tenby, Cardiff Albany Road and our longest-running shop, Pontypridd. Pontypridd actually launched in 1994 to help raise funds to open the doors to Wales’ first ever children’s hospice 21 years ago. Julian continued: “We’ve had some of the most wonderful staff and volunteers working with us and they have done a fantastic job,” he said. “I want to say a huge thank you to each and every one of them.

The Covid crisis has meant that we are facing in the region of £2 million income loss this year – almost 50 percent of what it costs to run the hospice each year. We are currently supporting over 115 children in these areas, but we hope that, despite the closures, you will still get behind your local Tŷ Hafan families and continue to host local fundraisers in the area or continue to support at the Tŷ Hafan shops nearby. We are so grateful for everything our supporters do for us and hope to be able to say hello again soon.

“We are so proud of what our shops have achieved, and the money raised is testament to the wonderful community efforts."

autumn/winter 2020

Did you know? Handcrafted by TyĚ&#x201A; Hafan is on Etsy! Visit our store: tyhafan.org/handcrafted

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“With Cerebral Palsy, it’s common that it comes hand-inhand with additional problems, but they’re usually diagnosed straight away. It hasn’t been so simple with Hari. He was a bit like a jigsaw puzzle really and nothing seemed to quite fit together.”

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diagnosed with awesomeness Meet Hari! We’ve been lucky enough to know this little star since July last year when he was referred to us after some difficult news with his condition. But since then, we’ve been there for him and his family every step of the way with support from our Swansea-based community nurse, Donna, as well as some of the outreach play team. Hari’s also been loving the virtual care we’ve been offering throughout lockdown, especially music therapy (his favourite) and has been showing off his exceptional piano, singing and guitar skills on Skype to our Music Therapist over the last few months!

which we already knew about. With Cerebral Palsy, it’s common that it comes hand-in-hand with additional problems, but they’re usually diagnosed straight away. It hasn’t been so simple with Hari. He was a bit like a jigsaw puzzle really and nothing seemed to quite fit together.”

You may recognise Hari’s cheeky face from our ‘urgent fundraising appeal’ back in April but you may not know that much about him and his condition, so here’s his inspiring story for you:

However, in April 2019, Hari received further tests after a long stint in hospital and was diagnosed with a rare condition, a life-limiting condition which explained all of his other symptoms.

“Hari was born ten weeks premature and was in special care for a while, but the doctors didn’t pick up on any significant problems other than the slight asymmetry of the brain”, said Hari’s mum, Cerianne. “We were discharged, but the day we came home I knew something was right. Hari stopped breathing and we were back in hospital again.” Cerianne said: “We spent the first year of Hari’s life back and forth to hospital, and it was during this time that they picked up on his heart condition. But I noticed other little things as well that didn’t seem normal to me. I noticed he didn’t seem to track us with his eyes, as well as other markers of development, which I was able to compare to my daughter, Olivia.

“What we thought we were dealing with turned out to be such a rare mitochondrial condition”, said Hari’s dad, Richard. “It’s so rare that our doctors didn’t even know much about it, so we weren’t signposted for help anywhere else. We literally had a letter and a leaflet. There was so much to take in and we didn’t know where to turn at this point. “We were blessed to find Donna, our Tŷ Hafan community nurse, at this point. She approached us after the big news and told us about all the services out there that could help us as a family – Tŷ Hafan being one of them. She liaised with the hospital a lot and just generally explained the condition to us, which was priceless at that point.”

“At nine months he couldn’t sit up, so I self-referred him to physiotherapy. He attended for a while, but the professionals eventually signed him off and said that he just had a little more catching up to do because he was premature. It was hard to disagree with them because he really did look like a healthy baby – he was actually quite chubby!” “But I refused to officially get Hari signed off because I just knew that his sister was so sharp; she was walking and talking at his age. It was mother’s instinct really.” Cerianne added: “Following this, Hari was diagnosed with Cerebral Palsy and that’s all we thought were dealing with. But then other symptoms and conditions started to emerge as he developed, like his visual impairment, mobility issues, extreme tiredness and the thickening of the heart wall

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“Donna visits us at home as and when we need the support, as well as Tŷ Hafan’s play and therapies team, which is wonderful. But even just knowing we can pick up the phone to Donna is a wonderful thing”, said Richard. Richard added: “For example, we’d planned to have a mini break at Centre Parcs, but Hari had a bit of a turn a few days before. We were worried this would mean a hospital admission, but Donna came over and prepared all of his antibiotics for us in case we needed them while we were away. She also called Centre Parcs and also the local hospital to give them detail about Hari’s condition in case his symptoms worsened – this is something we’d never have thought of doing! “We did need those antibiotics in the end, but Hari had a brilliant time. Despite feeling poorly, there was a day when we were all in the hot tub, and Hari managed to get everyone in there singing – his personality is just infectious. But we’ll always be grateful to Donna for what she did for us because her support meant that we were able to have a family holiday.” Cerianne who works as a special needs’ teacher, and Richard who now permanently works night shifts, explain what it's like for the family managing Hari’s condition day-to-day and the adjustments they’ve needed to make. Richard explained: “As a family, the recent diagnosis definitely made us think that we need to live for now. Yes, you plan as much as you can for the future, and we’ve always futureproofed ourselves as a family, but there are so many things you can’t plan – so we just live for now. “We’ve adjusted our homelife in the best way possible, and we’re managing. I now work permanent nights which seems a bit crazy, but that’s the routine that we’ve found works for us. Despite putting on a brave face, Hari’s daily routine is tough. He’s on around 138 tablets a week and we do physio exercises with him twice a day, using his frame to stretch out his legs (which he calls his ‘instrument of torture’!) but he never complains.

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barriers. He’ll do anything. But that’s how we’ve brought him up – there’s nothing he can’t do; he just needs to find a way around it.” “We’re also blessed to have the most wonderful daughter who has been by Hari’s side through everything. Olivia is just one year older than Hari, but she’s always shown such a mature understanding of his needs and continuously supports him through life’s challenges. Speaking a little more about Hari’s infectious and admirable character, Cerianne explained: “His headteacher says that he’s the happiest boy in school. Considering all the problems he has, he doesn’t whinge or moan. “He’s strong, cheeky, quirky and has a brilliant sense of humour. Because of his condition he doesn’t always spend a huge amount of time with children, so he’s got quite an adult way of talking. When you speak to him you think he’s older than he is and it doesn’t quite match up to his size! “There isn’t anyone like him. He draws you in and has an instant rapport with people. Hari likes to ask the consultants to talk directly to him too when at appointments – he’s always wants to be involved. He’s also the most thankful young boy. Every night when we have a cuddle in bed, he says to me “Thank you Mammy”. It breaks my heart; he just appreciates absolutely everything and everyone.”

The Kieft family visited the hospice for the first time at Christmas, “For most children after school they have tea and maybe play, bath the day Santa came along in a helicopter. Although Hari and and bed, but for Hari it’s medication, physio and appointments. He his family have chosen not to come for a stay at the hospice yet, takes a little longer eating. Everything just takes a little longer than they find it comforting to know that the hospice is there for them normal. But he is just amazing. He’s so full of life whenever they may need it. Richard said: “We didn’t know and, despite his condition, never misses what to expect for our first visit, but we were out on a thing. He plays Judo, joins his the last ones there that day! We definitely school friends when they do activities outstayed our welcome that day but “We’re also blessed to at our local church and art centre, that felt like a good thing because we have the most wonderful and he even went to Llangrannog knew Hari felt comfortable there. daughter who has been by Hari’s with his school. He doesn’t see life The facilities looked amazing and as having limits and doesn’t see Hari loved the look of the sensory side through everything. Olivia is room and the hydrotherapy pool. just one year older than Hari, but What we liked about Tŷ Hafan was she’s always shown such a mature the personality and friendliness. It wasn’t clinical. The children’s understanding of his needs and rooms had characters all over them continuously supports him and it’s these little things that take through life’s challenges.” the anxiousness away. “Hari’s stable at the moment so want to leave the beds for those families who really need them, but we know it’s there if we need it.“ Currently, the outreach support with Donna and the play team works so well, and it’s these services from Tŷ Hafan that has kept Hari out of hospital. That doesn’t just affect Hari, but it affects all of us. Cerianne added, “When I’m ever having a down day, I think of Hari’s resilience, look at his smiling face and he just takes the negativity away. He radiates happiness. And I think the best thing that sums Hari up is when we ask him what his diagnosis is… and says ‘AWESOME’. That, to us, just confirms what an extraordinary young boy we’re blessed to have in our lives.”

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hrh patronage extension His Royal Highness, The Prince of Wales has extended his patronage of Tŷ Hafan children’s hospice for a further term. Duke of Cornwall, Prince Charles has a long association with Wales’ first children’s hospice – officially becoming patron in 2001, just two years after the charity opened its doors. The Prince of Wales last visited Tŷ Hafan in 2018 when he met with life-limited children, their families and staff at the hospice.

“As the first children’s hospice in Wales, we value this association very dearly and it really makes a difference to our visibility as a charity.

“Knowing that we have renewed support from His Royal Highness is an amazing and timely morale boost for all our families, staff and volunteers.”

He also re-signed his purple handprint on the hospice’s colourful ‘wall of fame’ which was originally made during his first visit to Tŷ Hafan in 2001.

“We couldn’t ask for a patron of greater standing, and the timing of the confirmation couldn’t be any better.

The Prince of Wales wrote to the charity in March saying: “As your patron, I have nothing but the greatest sympathy for the predicament you face and the many difficult decisions and circumstances that have to be managed.

Speaking about His Royal Highness’ decision to remain as Patron, following a review by Clarence House, Tŷ Hafan chairman, Martin Davies said: “It is a tremendous boost to all our families at the most difficult time imaginable. “The generous support from The Prince of Wales has given Tŷ Hafan a huge help over the two decades of our existence.

“The Covid-19 pandemic has been such a difficult time for everyone associated with Tŷ Hafan. “Not only have all our fundraising activities been hit really hard, but Tŷ Hafan also provides expert frontline healthcare to some of the most vulnerable children in Wales and that has brought its own challenges at this time.

“Above all, I am certain you will be doing your utmost to maintain the essential elements of the care and service you provide to so many vulnerable people who depend on you, and of which I am so immensely proud as your patron.”

His Royal Highness, The Prince of Wales has extended his patronage of Tŷ Hafan children’s hospice for a further term.

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“I have supported Tŷ Hafan for years, and I wanted them to benefit in the future too.”

leaving a gift looks after tomorrow Regular readers of Cwtch will likely recognise long-time supporters, Leon and Alma Gardiner. Leon has been active in the community for many years and served Caerphilly County Borough as Mayor before retiring as a councillor in 2017. Much of his efforts have been to raise money for the charities he admires, including Tŷ Hafan, and he recently received a British Empire Medal for his services to the community. It seems like Alma and Leon have tried out all conceivable methods of fundraising for the charity over their 17 years as supporters, including giving a regular gift, playing the lottery, selling pin badges and a variety of individual fundraising activities, adding up to over £14,000. Tŷ Hafan obviously holds a special place in the hearts of both Leon and Alma and now they’ve chosen to extend their support even further by pledging to leave us a gift in their will.

“I have supported Tŷŷ Hafan for years, and I wanted them to benefit in the future too.”

Gifts in wills are vitally important to Tŷ Hafan in helping us to ensure that life-limited children and their families can live a fulfilled life and make the most of the time they have together. Last year, 25% of our care provision was funded by gifts in wills. In these pages, we’ve shared so many weird and wonderful ways people chose to support us and as cliché as it sounds, every penny is vital. We also know that jumping out of a plane, running a marathon or climbing one of the world’s highest peaks isn’t for everyone so another idea could be to include a gift in your will like Leon and Alma have, allowing us to plan for the future. Whatever size, in the long-term your gift will help ensure a short live is a full one.

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events in isolation Like our shops, Covid-19 brought our 2020 events programme to a grinding halt before it even truly started. As ever, we had a full calendar planned chocked full of exciting events, including the 21st annual GE welsh3peaks challenge, our first Tread and Trail bike and hike and the ever popular Family Fun Day, your chance to visit the hospice grounds to see the fantastic impact your money makes to the hospice. Obviously, the impact of losing these important events has been huge but we couldn’t just sit back and not do anything. The events team immediately went about devising ways you could get involved in fundraising from home while having fun! And we really have had a lot of fun despite the situation. But they wouldn’t have been nearly as enjoyable without your engagement and how you all got involved to help us get through the crisis. Here is a look back at our events in isolation.

virtual quizzes It all began with our series of virtual quizzes. They proved a great way for us to share a few hours each week together, albeit at a distance, while keeping the brains ticking over. With themes such as Disney, Movies, Music & TV, All things Welsh and Family fun, these quizzes took place on a Friday evening and absolutely loads of you took part. We had some wonderful guest presenters too, including Michel Sheen and Ruth Jones, and we managed to raise just under £6,000.

marathon in may

Possibly our mos t popular event en ded up being Marathon in May , where participan ts got up off the sofa and out of th eir comfort zone to complete a 26.2 mile maratho n during May, ra ising an incredible £36,000 in the pr ocess. Some even chose to see how many marathons they could comple te during the month, going the extra mile for Tŷ Hafan! We heard so man y inspirational sto ries from participa in this challenge an nts d it was clear how important it had become to help blo w away the lockd own blues. Helen Hinton shares her reason for taking on Marathon in M in 'my personal loc ay kdown challenge' on page 17.

virtual welsh3peaks challenge The welsh3peaks challenge is one of our flagship events and has raised well over £1.7 million since we first scaled Snowdon, Cadair Idris and Pen Y Fan in 1998. Not being able to climb these peaks in 2020 was a real blow. But where there’s a will, there’s a way! Participants climb a combined height of 9,397ft (2,864m) – these three mountains are not for the faint hearted – so we gave you two options to complete this challenge virtually instead: Either walk or run the total distance that you would do if you were walking up the three mountains - 20.35 miles or 32.7km or complete the same number of vertical steps required to climb the three mountains (approx. 27,638 which is 1,063 ascents) by walking up and down your stairs. The virtual challenge meant that anyone could give it a go. They had the whole of July to complete the distance rather than the 24 hours participants in the regular challenge would have. And you all seemed to love it, with participants raising over £14,000 for Tŷ Hafan.

The Cardiff University Cardiff Half Marathon has been rescheduled for 28 March 2021 and we’d love for you to run for us. Email events@tyhafan.org to register your interest.

autumn/winter 2020

my personal lockdown challenge Up until three years ago, I knew very little about Tŷ Hafan. In January 2018, our family was hit by a massive blow when my cousin’s son, Thomas, was diagnosed with a rare condition called Adrenoleukodystrophy or Cerebal ALD. Thomas and his family were introduced to Tŷ Hafan, where they have been offered so much support, care and love. Thomas quickly changed from a cheeky, active little boy to being totally dependent on around the clock care. Thomas received regular respite, with Jamie, Sarah and Ella being able to go and also stay with him at Tŷ Hafan. This allowed them the time to spend the time together as a family. I visited Tŷ Hafan in July 2018, I visited Tŷ Hafan whilst Thomas was staying there. I was hit by the enthusiasm, positivity and care as I entered the building. Everyone was so welcoming and reassuring. There were so many personal touches around the building that will stay with me; the handprints on the wall, personalised bedrooms for the children staying. Ella, Thomas’s younger sister was able to have such freedom whilst she was here and was also able to attend the sibling support groups. As Tŷ Hafan became such an important place to our family, some family members engaged in the Ride to the Rugby to raise money and much needed funds for Tŷ Hafan. I have helped organise several events to support which has included a quiz night, afternoon tea and race night.

Sadly Thomas lost his fight with the condition in June 2019. Thankfully he spent the last but precious moments of his life at Tŷ Hafan. As a family we are so thankful to Tŷ Hafan and this is another reason why I took part in ‘Marathon in May’. I personally found the prospect of ‘lockdown’ difficult, but the challenge kept me going and pushed me to get out and walk. The stunning weather and amazing countryside whilst living so rurally has also helped a lot! I knew it wouldn’t be easy, but with the support of my family and friends I have kept going. It has also helped me to reflect on the challenges Thomas faced but never gave up. With the help and support he had from Tŷ Hafan he certainly didn’t do this without a fight.

a night in with Tŷ Hafan As you couldn’t go out for a slap up meal during lockdown, we thought we’d bring a sophisticated evening of fun, food and fundraising to you. We served up all the ingredients for a fantastic night that includied: • A cook a-long meal with amazing head chef and owner of The Hardwick, Stephen Terry • A cocktail masterclass with award-winning, designer bar, The Dead Canary • Entertainment • A luxury food and drink online raffle with incredible prizes from a host of great local businesses • Just under £1,000 raised for Tŷ Hafan

Tŷ Hafan’s big balloon race

as our event (so far) w Our final virtual pants ci ce, where parti Big Balloon Ra ters pu m co d to their ended up glue on llo ba al rtu vi their to see how far dly en fri oec 0% 10 would fly – in a about reby everything simulation whe on! llo ba e th pt – exce the race is real ed rm animals are ha So no birds or ! during the race

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

this is me…king cai We love to celebrate Children’s Hospice Week – the one week of the year dedicated to raising funds and awareness of children’s hospices across the UK – and this year was no exception. The theme this year was ‘This is…’, and while we couldn’t mark it with our famous party to end the week, we used the opportunity to introduce you to some of the children we care for. So, without further ado… Hiya, my name is King Cai and I am 11 years old. I was born with Vici Syndrome but I have never allowed my disability define me. Even though I have Vici Syndrome and am aware it could limit certain aspects of life for me, I will never allow it to determine what those limits are, and mummy, daddy and everyone around me have always been supportive of me – I live in a world where people do not judge me by my disability. My world is fully inclusive. By fully inclusive I mean everything is adapted to me, so it’s all about what I can do rather than focusing on what I can’t. I am involved in everything that happens whether it’s a family party, a day out, watching a movie, a holiday… I’m coming! I am like any other human, I have feelings and emotions I just express myself differently from others. I have friends and play with them; I go to school full time and love it. I am able to go in a car and enjoy a ride, I can go on holiday and have fun, I can go swimming and splash, I can have food and enjoy it, I can be naughty and know exactly what I’m doing, and most importantly I know my own mind. I know what I like and what I don’t. I have the same basic needs as every human, but due to my condition the way they are delivered is different. I smile, I laugh, I am loved and I touch everyone’s hearts who meets me. Every child expresses their emotions and love in

different ways. My life is just as important as anyone else’s. It doesn’t matter if I’m unable to talk, walk, eat, sit, I don’t need to compare myself to other people because I am me! I am able to communicate through facial expressions and body movements, I have a wheelchair to get me about, and I have a tube to feed me! Problem solved. The only thing I don’t have on my side is my health, but I have an amazing team of doctors, nurses, physios, OT, teachers, play therapist, care staff, friends and family who support me every step of the way and provide me with everything I need, to keep me well. And when I am ill they help make me better. We are all equal in this world, and from the moment my parents knew about my disability they wanted to educate people about people who are different and show people we are not weird or scary. After all what is normal? I am a little boy who wants to be loved and treated the same as any other child. I am King Cai. THIS IS ME.

autumn/winter 2020

supporting positive mental wellbeing with play Mental health awareness and positive mental wellbeing plays such an important part in the way we deliver care at Tŷ Hafan. For Mental Health Awareness Week our play worker, Emma Atkins, wrote about the benefits of ‘play’ and its power in supporting positive mental wellbeing, both for the child and the family. It’s important that we can continue to provide children with opportunities to play in these challenging times while meeting up with friends and trips out isn’t possible. Play offers freedom - a chance to be imaginative and expressive. Playing supports positive mental wellbeing as it provides opportunity for problem solving and helps children to feel a sense of achievement. This can develop their confidence and

self-esteem. Through playing, children can also learn how to understand and manage feelings of frustration. To support the wellbeing of children at Tŷ Hafan, the play team offers group and 1-1 play, as well as music and story-telling sessions to those staying at the hospice, all via video call. This has meant that, despite the team working remotely, children staying at Tŷ Hafan still have the opportunity to be creative, imaginative and expressive, and experience the benefits of play. We’ve also been offering 1-1 and group art, play, music and story sessions via video call for families in the community. This has given our families chances to be creative, express emotion, have fun and make precious memories in the comfort of their own home. As well as this, the virtual sessions have allowed us to stay connected and continue to still ‘be there’ for families, despite not being able to visit them. As art has really similar benefits to play, I’ve been offering 1-1 creative art sessions for children in the community. By getting covered in paint and glitter together…well, over video anyway, it’s given children some autonomy in this really restricting time and an opportunity to express and explore difficult emotions creatively. Alongside all of this, you may have seen that we’ve been connecting with our families by posting regular music videos, stories, arts and crafts ideas and story massage ideas on social media which we hope have inspired families to keep being creative and most importantly, keep playing!

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fundraising update

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

Sadly, so many of our supporters have had to cancel their fundraising activity due to the coronavirus restrictions and we’ve also had to cancel our events too, including the welsh3peaks challenge, our overseas Cambodia Trek and our dads' 10nTaff challenge. We’ve also had to close the doors of our shops across Wales. However, we know how much our supporters want to stick by our side while we battle through this challenging period – and we can’t thank them enough for this. So we wanted to share some of our favourite of your stories from lockdown.

daniel saves his pocket money to buy ppe

gloves that Daniel showing off the en when they ildr ch er aft k helped us loo needed us most

10-year-old Daniel Thomas, from Barry, wanted to do something to help Tŷ Hafan from home and was looking for a way to support that could really benefit the children and care team at the hospice. He did exactly that with a selfless gesture that has put a smile on all of our faces here at the hospice. With Tŷ Hafan being their local charity, Daniel’s family have supported the hospice a lot over the years and always try to help when they can, so when Daniel saw that the hospice was in need of PPE donations, he got involved by gathering up his pennies and saving his pocket money to purchase 600 pairs of medical, latex free gloves for our care team. He wanted to wait until he had £70 which meant he had enough money to buy the gloves in various sizes to suit everyone. Daniel explained that Tŷ Hafan was his charity of choice because he wanted to “help the children and the wonderful carers who look after them” and “hopes they will be useful”. He’s even asked what else he can do to help raise money for the hospice!

Thank you Daniel for dropping off your very valuable donation this week and for playing your part in protecting children and staff from the virus.

P.S. we think you deserve some bonus pocket money this week...

autumn/winter 2020

pushing forward with shane o’neill While many of us were enjoying a weekend lie in, personal trainer Shane O’Neill, from Cwmbran, pushed a 1.4 tonne car 10k through severe wintery weather – all to raise money for Tŷ Hafan. Shane said: “We had all weather (sun, sleet, snow, hail and rain) during the time, but we got there in the end. I couldn’t have done it without my supporters – family, friends and medical support staff of BPC training group.

sponsored Scott Hayden for his yearlong fundraiser for the charity. Then last year, myself and Jed Davies did a number of fundraising events for the charity (including a 5k tyre flip challenge with the members of our bootcamp Cwmbran Bootcamp.

“The biggest hurdle was the incline on the course at the Pimlico mile, which has a slight incline making the task of pushing a car from difficult to near impossible! Once this was done, we picked up pace and finished strong.

“What they do for the kids and the families is truly special.”

“I chose Tŷ Hafan to support because I cannot think of a more deserving organisation. I first became aware of them when I

the tonne Ford Ka 10km in Gareth pushing a 1.4 er ath we tish wild Bri

The challenge took around five and a half hours to complete

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our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

green, green grass of home We’re all so thankful to the teachers who had to throw out their lesson plans and make changes overnight but keep coming through for children everywhere with fun and interesting topics, as well as activities that keep children active. Rhian Rogers who teaches at Rumney Primary School, tells us a wonderful story of how her community has helped one of our families. I have the pleasure of teaching two sisters that are very special indeed - Alice and Scarlett Haswell from Cardiff. Alice has a life-limiting condition called Goldenhar Syndrome which affects her sight, hearing, mobility and feeding. Alice’s condition affects everyday life for all the family, especially her big sister Scarlett. The family have been shielding at home since 16 March as a result of the Covid-19 pandemic. Against all the odds, Alice attends our Reception class in school with the support of Lynne, her key worker, who supports Alice with her learning and medical needs. Having spoken to the family in early June, their Mum informed me that both the girls were finding it difficult to complete the ‘sport’ challenges that the school had set for home learning. This was due to the fact that their garden was mainly laid with patio slabs and gravel. Alice is unable to move safely around the garden and this undoubtedly makes ‘lockdown’ even harder for her.

Mum said she was keen to lay astroturf down for the girls to run and play on but was unable to source any deliveries or fitters during lockdown. The weather was incredible and the heat was intense, but both girls were restricted to the small patio area. As their class teacher, I was really upset to think of the girls being unable to run and play in the garden. I decided to contact a local landscaping company for help and asked them to consider supporting this family as a charitable/community project. Amazingly the company agreed and Lee Jarman contacted the family the next day to discuss the project. I was thrilled to hear from the family who are now the proud owners of a beautiful, green lawn for the girls to run, play and roll on. The kindness and generosity of Jarman’s Garden Services needs recognition, especially at such a difficult time for local independent businesses. It really is a case of ‘The green, green grass of home’!

The transformation by Jarman's Garden Services well under way ete her uggled to compl Before - Alice str ning le while home ar sports challenges

After - A surface go

od enough for any sports day

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There is always something special happening at Tŷ Hafan that’s only possible thanks to the incredible support we receive from people like you. If you’d like to hear the stories we couldn’t fit in Cwtch each month, sign up to A Little Cwtch, our e-newsletter, by visiting www.tyhafan.org/stay-in-touch or by filling in your details below and ticking the box, then return this form using our freepost address: Freepost RTBS-YCZU-JZSJ, Fundraising, Tŷ Hafan, Hayes Road, Sully CF64 5XX. Your details will be kept safe and secure and will only be used by us. You can change your mind at any time by calling 029 2053 2255 or emailing supporterservices@tyhafan.org. title

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Please let us kn ow if you’d like to receive our monthly e-newsletter called A Little Cwtch: I’d like to receive a Little Cwtch by email email address 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. TŷHafan - the hospice for children in Wales. Hayes Road, Sully, CF64 5XX Registered Charity No: 1047912. TŷHafan® is a registered trade mark.

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