Tŷ Hafan's Cwtch Autumn/Winter 2019

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newsletter autumn 2019

our news and stories from tŷ hafan

a hospice fit for the future inside 2

0 the hospice for children Wales Celebrating y e in a r s

yr hosbis i blant yng Nghymru

bringing the past to life p.6

keeping elis’ memory alive story p.10

conjoined destiny p.14

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welcome Welcome to the Autumn/Winter edition of Cwtch.

And just like that, 20 years of Tŷ Hafan are in the record books. It’s been an eye-opening year too. We’ve spent time looking back as well as forward and it’s been great fun to see just how far we’ve progressed since 1999.

Hopefully you’ve seen some of our Tŷ Hafan Rewind posts on social media, with footage of Emily Weaver becoming the first child through the Tŷ Hafan doors, the evolution of our logo and nostalgic looks at media from the past. Memory making is such a huge part of Tŷ Hafan and it’s been an absolute pleasure to revisit the times that have helped shape the charity we know today.

Now is a time to look forward and we are so excited to reveal our plans to ensure that Tŷ Hafan remains at the forefront of children’s palliative care. The garden project is well underway, with the first phase having been completed earlier this year.

Now the focus turns to the rooms and communal areas in the hospice, in need of updating after two decades of memorymaking.

Thank you once again for your support that has allowed Tŷ Hafan to thrive over the years. We hope that you are as excited about the developments as we are. Just like our supporters who were instrumental in getting Tŷ Hafan off the ground in the 1990’s, you are so important to us being able to continue to do what we do.

contents stories from the scout group........................................................................4-5 bringing the past to life...................................................................................6-7 meet glenys......................................................................................................8-9 keeping elis’ memory alive........................................................................10-11 ready steady fun..........................................................................................12-13 conjoined destiny.........................................................................................14-15 keeping it in the family................................................................................ 16-17 fundraising noticeboard............................................................................18-19

The three main areas that will be focused on are:

2 Ten children’s bedrooms in the care wing

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1 The self-contained family flat used by families recieving end of life care

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Communal dining room an lounge

nd

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years

under our belt With 20 years under our belt and with over 800 children having used the hospice, it’s no surprise that some of the facilities are looking a little tired. So to ensure longevity of the hospice, we are embarking on a refurbishment project that will help Tŷ Hafan be a hospice fit for the future.

The Care Wing forms a central part of our hospice and the bedrooms are fundamental to the specialised delivery of care and respite that Tŷ Hafan offers to families. The hospice renovations have been designed with the children and families at the centre of all plans and the building will offer a warm and welcoming non-clinical environment.

as well as acknowledging the tranquillity of beaches in general. Refuge and relaxation will be the focus for each space, especially the bedrooms and flat, without taking away from their suitability to meet the medical and physical needs of each child.

These purpose built bedrooms are used everyday, providing private accommodation for the children when receiving care. Each room can be personalised to the individual child staying in it, such as their favourite bedding, photos of their family and other soft furnishings, making it one of the most unique places in the hospice for families.

At its core, Tŷ Hafan is a place where memories are made, often ones that can’t be made anywhere else. Perhaps it’s getting to pet an animal that the child had only ever seen in pictures or experiencing arts and crafts for the first time.

Maybe a sibling gets to play in a park with their poorly brother or sister, something that they’ve never been able to do before. Or maybe they get to have their first family trip to the beach.

It is important that we manage to provide a home from home feel for the children and their families during their stays, while still being able to offer the 24/7 medical care that allows them to take a break from their everyday responsibilities.

The refurbishment project will mean that our families can continue to make these memories in the most comfortable and homely place possible. A place directly suited to their complex needs, without sacrificing the functionality and practicality that is essential to that comfort.

As the number of children living with life-limited conditions continues to increase, our vision of a Wales where all children who may die in childhood live a fulfilling family life remains the same. With the increase in occupancy rates at the hospice, it is vital that we invest and future proof the facilities to ensure that Tŷ Hafan can continue to support children and families across Wales for the next 20 years.

A project of this scale is always going to bring its challenges, but ones that can be overcome, with the benefits greatly outweighing these issues. The aim is to have completed the work

by July 2020 and we are extremely excited to see the ongoing developments. If you’d like more information on the project, please contact us on info@tyhafan.org.

We have chosen an overarching beach theme, inspired by our fantastic location on the shore of the Bristol Channel,

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stories from the scout group Tŷ Hafan cares for children of all different ages and abilities, so inclusivity has always been integral to what we do.

Giving children the opportunity to take part in activities that other children take for granted is so important to them and their families.

It was with this in mind that Tŷ Hafan set up the first Scout group in the UK back in 2008. The group meets three times a month and is run by volunteers who bring the joy of the scouts to Tŷ Hafan children, with activities as diverse as field craft, archery and cookery.

We were delighted to be able to take six Scouts and their families to Miskin Mill Scout Village for their very first family weekend camp in August.

Ten-year-old Seth Burke who has Duchenne muscular dystrophy attended with his two brothers, Reggie and Elyah, eight-year-old Christopher Jones who has Hypoplastic Left Heart Syndrome was also joined by his sister Bethan. Twoyear-old Matilda Philpott who has Stickler Syndrome was joined by her two brothers, Oliva and Alfie, four-year-old Alice Haswell who has Goldenhar Syndrome camped out with her sister Scarlet, and 13-year-old Daisy Stacey who has Vacterl Association attended with her sister Molly.

Over the weekend, the families took part in a range of activities from archery, crafts and pop rockets to laser shooting, fire lighting, bush craft and raft making.

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The camp was a real Scouting first - the first time that children at the hospice had been on a Scout Camp, something leaders have been hoping to achieve since the start of the Group.

Ruth Weltch, Group Scout Leader of the Tŷ Hafan Scout Group said: “The opportunity to regularly set up camp in the great outdoors is one of the main reasons young people enjoy Scouting so much and we wanted to give our children, who would not normally have the opportunity, the chance to take part in a weekend of outdoor activities and to sleep under canvas with their families.

“We have been able to give these children the opportunity to take part in activities not usually accessible to them and that we take for granted. It was an absolute joy to see them and their families take part in the weekend’s activities, seeing them smile and forget about their worries for a while was heart-warming.”

Tŷ Hafan’s play and therapies lead, Lynne Phelps, said: “The hard work, time and effort put in by the Scout Group since its inception has been truly amazing. The Group has brought so much happiness to the hospice and given the children referred to us an opportunity to take part in activities with their families that they wouldn’t have had access to if it wasn’t for Scouts.

“The group has had a really positive impact not just on the children in our care, but also their families and our staff. We really can’t thank the T ŷ Hafan Scout Group enough.”

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“... We really can’t thank the Tŷ Hafan Scout Group enough.”

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our news and stories from t ŷ hafan

bringing the past to life Just as every child has the right to play, the opportunity to learn and discover the world we live in is so important for developing creativity and imagination, as well as physical, cognitive and emotional strength, regardless of whether the child is healthy or has a lifethreatening condition. These aspects of development play a major part in allowing children to reach their potential, while giving their families the life-long memories created by sharing these wonderful moments with their child, brother or sister.

Tŷ Hafan has been lucky enough to partner with National Museum Wales, Amgueddfa Cymru who, through funding with Children and the Arts, has been running the Start Hospices Programme for the last two years.

The aim was to make museums accessible to the hospice and our families so that they can experience new fun ways of engaging them in arts and culture. There has been a strong emphasis on inclusivity and building memories to cherish forever.

Our first family day took place back in May 2018 at Cardiff. Families had an adventure walk, heard under-the-sea stories, took part in a musical sensory session, and there was paint galore! The museum also came into the hospice to deliver sessions here, with both our families and staff getting so much from them.

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The museum has been awarded further funding to provide another two family days, two outreach days at the hospice and a sibling programme throughout 2019. Our second day “From the bottom of the sea to the furthest star” held in January at Cardiff was another roaring success.

One of our most recent days out was at St Fagans National Museum of History and the Family Fun Day “Fy Nghmru/My Wales” brought Wales to life for 17 of our families.

It was a fun-filled day of Welsh costumes, dragons, love spoons and the amazing festival of Y Draig! We had special visits from Nessa, a dragon, a miner, a Welsh lady, some rugby players and St David himself!

The day was interactive, inclusive and, of course, fun – engaging our families with the museum and all its mysteries! The families paraded around the museum singing their festival song that they composed and one participant said: “I thoroughly enjoyed the day, I sang in the sun, parading around in front of everyone without a care in the world. Thank you!”

This was the second family day of 2019 to run from the Start Hospices Programme in which The National Museum Wales secured a further years funding. It was our first experience at St Fagans National Museum of History and it was enjoyed by all.

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The Sibling Summer Programme also ran over the summer holidays in St Fagans and was a sizzling success!!

Every week throughout the summer, the siblings met and participated in “Survival through the ages!” They baked bread on the fire, made pillows, went bug hunting, pond dipping and even created their own mud dragon who is going to live at the museum. The children climbed the high ropes and made their own shelter. The event culminated in a party and sleepover which we aim to continue as an annual event incorporating all our families.

We also had the pleasure of welcoming our museum colleagues to the hospice this year to take part in a special Christmas day put on for a child who wanted to experience Christmas one last time, and they were able to join in our famous Christmas Panto!! This allowed the museum staff to see the work we do at the hospice.

making moments matter We made sure it was the ‘moments that matter’ during Children’s Hospice Week, the only week in the year dedicated to raising awareness and funds for children’s hospices and palliative care services across the UK. We planned a full week of activity centred around creating special memories for the children and their families by providing opportunities to share new and important moments at the hospice.

Photo booths, live music sessions, Makaton, dancing, creating memory jars, a mud cake bake off and decorating biscuits with a Great British Bake Off contestant were just a few of the lasting memories the children and their families made.

We topped off the week with a big ‘Bake Off’ themed fancy dress party where everyone was encouraged to dress up using the theme ‘moments that matter in time’ — and we had everything from Albert Einstein to Pat Butcher, dinosaurs to famous chefs, and legendary Welsh rugby players to suffragettes!

The children loved making a delicious colourful mess and decorating biscuits with our special visitor, Jon Jenkins, the Welsh contestant from ‘The Great British Bake Off’, and he also judged the mud cake bake.

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meet glennys, one of our longest serving fundraising volunteers Glennys is an inspirational 88-year-old volunteer who has dedicated her time to T ŷ Hafan since 1999 from fundraising in her front garden to picking up collection boxes in her community. Now, 20 years down the line and with nearly £30,000 raised, Glennys has decided to “retire” from her duties, but will always be a part of the T ŷ Hafan family.

Everyone says to me, “Are you the lady from Tŷ Hafan? Are you the Glennys Old?” and I say “yes, that’s me!”

“Some of my favourite fundraising days have to be in 2000 when I made £800 in one day, and then in 2005 when I counted 60 people who came to the house!

“I’ve always helped a charity – it’s just my nature. And I love company and people coming back and forth. But the reason I’ve chosen Tŷ Hafan is because it’s children. I feel for the families and they need the support.

“After going through a bad patch when my husband died, I knew I needed a new focus in my life. My friend gave some advice back then, to say no to nothing, and I thought, well that’s it! Pick yourself up and enjoy it.

“I’d say to anyone thinking of volunteering to just do it - you’ll get the best out of it!”

“I think I’ve been helping Tŷ Hafan for so long now it’s who I’ve become - the Tŷ Hafan lady. It’s quite funny really!

“I’ve done a bit of everything as a fundraising volunteer, including gathering Tŷ Hafan collection boxes around my community, but I think I’m more recognised for the fundraising days I host at my house.

“Every penny I’ve raised has come from my front garden. I put a stall outside my door and people pass for a browse and that’s when many a person will say I don’t want anything, but leave a pound on the table anyway.

“I put balloons, banners, posters and a welcome sign up outside my house to attract people. It’s an enjoyable day from 8:00am in the morning because I get all the neighbour’s tables and chairs to put out the front and everyone gets involved. Even after we’ve packed away, we all have drink and food in the house and the last people don’t go till 11:00pm! They wash up before they go, mind.

“One of my best memories I’ve made has to be when I met Prince Charles. He came to the hospice last year and I was invited to meet him. It was so special and we had a lovely little chat.

“I also felt very honoured to have met Suzanne Goodall, the founder of Tŷ Hafan, who sadly passed away in 2017.

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1 – 7 June is National Volunteer Week each year and a chance for us to say thank you and shine a light on the work our amazing volunteers do all across the organisation. But what they do is so essential to the smooth running of the charity that we wanted to do something a little more special and turn June into Volunteer Month.

Each department got involved, shops held their own drop in for a cake and a cuppa afternoons and it all culminated in a tea party in the hospice grounds where 120 volunteers and guests celebrated with us. We were delighted to be able to present Mandy Beecham, Lyn Thomas, Krystyna Gdula, Jilly Bebbington, Linda Greenberg and Andrea and David Lalande a short break to a hotel each through the Room to Reward scheme.

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“My friend gave some advice back then, to say no to nothing, and I thought, well that’s it! Pick yourself up and enjoy it.”

£30,000 raised!

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keeping elis’ memory alive Our seasonal appeals allow us to shine a light on specific aspects of T ŷ Hafan and help bring into focus things that might not be immediately obvious when thinking about a children’s hospice. Last year, we shared how respite care at the hospice is often the only holiday many of our families can have and we’ve also shown how our nurses bring the medicine and the magic.

“Sitting in the doctor’s office with my wife and hearing this, it felt like I was drowning,” Alun said. “My mind was racing, trying to work out how to deal with it while trying to stay sane at the same time. I was questioning everything and I felt really alone, that I couldn’t or shouldn’t speak to anyone because if I did, then everyone else would crumble. I was trying to be strong for the family and then going away and having a meltdown myself, away from everyone else.

“Thinking about it, this is when we started to grieve for Elis. We were faced with a parent’s worst nightmare: the idea that we were going to outlive our child. She was still with us now but she wasn’t going to be and that thought broke me.”

The Williams family started coming to Tŷ Hafan for respite breaks. Elis loved her visits, especially the lights and bubbles in the sensory room that never failed to light up her eyes.

Alun continued: “Elis died [in 2010] when she was 16 months old. She died following an operation when she caught a virus.

The doctors had decided to move her to a ventilator in intensive care and since we wouldn’t be able to see her while they moved her, we decided to pop home to see our other children.

When we got home, we received a phone call to say that Elis had died. It was the worst thing that has ever happened to me.

“And that’s when everything went silent. All the noise and all the visitors, they went away and we were just left there.

“But T ŷ Hafan, they stayed with us. They supported us through it all, the grief and the sadness, and shared their own memories of Elis with us. The support that was available to us, both in her life and after her death, was incredible.

They kept checking in on us and offering support when we needed it ...

They invited Elis’ brothers and sister to groups and to days out where they could meet and talk and play with other siblings.

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This summer, Alun Williams described the unthinkable reality faced by hundreds of Welsh families - knowing that your child may die before you.

Alun’s daughter Elis was born with facial palsy, heart problems, feeding issues and was deaf. At nine days old, the doctors told Alun and his wife Vikki that Elis’ brain had not developed by the time she was born and they didn’t expect her to leave the special care baby unit.

They put us in contact with other families and through meet ups, we shared our experiences. We could just come to Tŷ Hafan and talk without any judgements, and they understood the things we were going through. They helped us realise that Elis would always be a part of our family, even when she had died. We can say her name and talk about her, celebrate her birthday and buy her presents. It’s ok to do all of those things because she is still a part of our family and we are still her mum and dad.

“However after Elis’ death, we noticed that friends became distant. The people who knew her, they stopped talking about her and saying her name for fear of upsetting us but what they didn’t understand is that we want to hear her name. We want to talk about her, we want them to ask questions about the condition she had and the care she received because she is still a part of us. It got to the point where we weren’t hearing Elis mentioned outside of our own family and that scared me because it felt like her memory was fading. Tŷ Hafan understood this; they knew how important it was for us that Elis’ name was somehow forever.

“Ten years on and Tŷ Hafan is still helping to keep Elis with us.

They’re who we turn to when we need support or guidance or even if we just want to hear Elis’ name. Their care doesn’t stop and now with their Birdsong project, Elis will forever be present at Tŷ Hafan. Birdsong gives us the opportunity to remember and celebrate Elis and the other Tŷ Hafan children who have died by translating their names into birdsong using Morse code and playing their melody in the hospice memorial garden. It serves as a reminder of their lives.

“When I went to the hospice last, I visited the gardens. I sat and waited to hear Elis’ name. Hearing all those unique birdsongs and the lives they represent, I felt a sense of calm drift over me as I realised that Elis isn’t alone here, she is part of an incredible harmony with all the other children. She won’t fade away in time, she will always be with us and she will always be here singing out her name with her friends.”

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“They helped us to keep Elis’ memory alive.”

to o much s u o y k Than onated d o h w e everyon mer appeal um re to our s s to sha u d e w o upport and all s r u o Y . tory Alun’s s t we managed ha e meant t 1,716.15 and th £1 to to raise eturned r u o y s e messag mi birds a ig r o r u us on yo t-warming. ar were he

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ready, steady,

fun!

a dash of colour School children were showered with the colours of the rainbow as we welcomed the first ever Rainbow Dash to schools in Carmarthen.

It was great to see our famous rainbow race returning as staff and volunteers from Tŷ Hafan and some incredibly enthusiastic teachers and parents from the schools splashed 700 school children with 600kg of powdered paint! We even gave the event a fresh new name too!

We teamed up with Carmarthenshire County Council’s ‘Active Young People’ team for Rainbow Dash, not only to raise funds for Tŷ Hafan but to encourage pupils to be more active and inspire them to join school and community running groups.

Rainbow Dash took place on Wednesday 26 June at the Carmarthenshire Leisure Centre fields and track in Johnstown and we saw pupils from Queen Elizabeth High school, Ysgol Dyffryn Taf and Ysgol Gyfun Emlyn run, jog and walk the colourful 3km

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route.

With the help of some amazing volunteers, we splashed the students with blue, green, yellow, orange, red and pink powered paint at various points along the route and it’s safe to say not many people managed to dodge the splatter! (Good work paint station volunteers!)

It was also brilliant to see so many partners getting involved in the event, including the WRU who brought along a very special shiny visitor… the Grand Slam trophy!

We were so delighted to have been involved in such a fantastic partnership with Actif, and, who knows, maybe the Rainbow Dash could become an annual event!

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ride to the rugby In the height of Rugby World Cup excitement, three T ŷ Hafan dads have signed up to an epic 280-mile cycle from Cardiff to Dublin to watch Ireland vs.

Wales in the 2020 Rugby Six Nations.

The ‘Ride to the Rugby’ fundraiser will see over 40 riders taking on a challenging cycling route over four days, from the Principality Stadium in Cardiff on 4 February to the Aviva Stadium in Dublin, just in time to watch Ireland kick off against Wales on 9 February.

The three dads are James Meacham, Patrick Lord and Matthew Smith and their children have been supported by Tŷ Hafan.

James Meacham, from Blackwood, is a bereaved dad who will be riding in memory of son, Thomas, who died just a couple of months ago with an ultra rare genetic lifelimited condition called Adrenoleukodystrophy (ALD) that affects just one in 18,000 people. He explained: “Signing up for this challenge wasn’t even a question. Tŷ Hafan was there for Thomas every step of the way. The care and support we received as a family, even when we weren’t there, was incredible.

“The hospice introduced me to support networks and social groups where dads, who were all experiencing similar hardship, could get together and talk; it was suddenly like being given a comfort blanket. It also gave me the opportunity to meet other families who wanted to get involved in challenges to support the hospice together.”

James Meacham took part in 2019’s Six Nations ‘Ride to the Rugby’ challenge from Cardiff to Paris in February and alone raised over £6,000. This time he will be joined by two more Tŷ Hafan dads who are taking part, as well as some friends and family members.

James added: “The ‘Ride to the Rugby’ Paris challenge back in February was such a fantastic experience — it was tough but so rewarding. I made life-long friendships and cycled alongside the likes of Wynne Evans and Rupert Moon which, as you can imagine, was a brilliant laugh. I didn’t think twice about signing up again when Tŷ Hafan launched the Dublin challenge, and got three others to sign up with me too!

and others who had never ridden a road bike before, and that’s the great thing about it – anyone can take part.

“If you sign up to the event, Tŷ Hafan will support you every step of the way by giving you fundraising advice as well as training tips.

The individual fundraising target is £1,200 which also covers the costs of accommodation for five nights, all meals on route, a fullysupported ride, branded training and event shirts, the ferry crossing and return transport, plus the all-important ticket to the game.”

For more information and to sign up to ‘Ride to the Rugby’ Dublin 2020, contact Sali Thomas at sali.thomas@tyhafan.org or 02920 532 279.

Visit: www.tyhafan.org/ride-to-the-rugby.

“Even now, I don’t know where I’d be without Tŷ Hafan. It feels like part of a club you don’t want to be in. I’ll always continue to support and fundraise for them because I want to make sure that children and families, similar to us, can continue receiving the invaluable support that we had.”

We hope that Ride to the Rugby will raise over £40,000 to go towards providing vital lifeline services to the children and families who need it most, enabling them to share new experiences and create memories as they face the toughest challenge of their lives.

Tŷ Hafan’s Head of Events, Sali Thomas, explained: “The ‘Ride to the Rugby’ challenge to Paris back in February was so successful we had to do it again in 2020. We had participants who were experienced cyclists

events roundup This year’s events programme kicked off in April at the Virgin Money London Marathon, the first of a number of running events Tŷ Hafan has been represented at, with the APB Newport Wales Marathon and 10k following hot on its heels.

The GE Aviation welsh3peaks challenge welcomed over 270 heroic hikers who made their way to north Wales before setting off up Snowdon, the highest mountain in Wales, at 4:00am. Their next peak to summit was the mighty Cadair Idris, before taking on Pen y Fan and completing the 20.35 miles and 9,397ft ascent in under 15 hours — an incredible challenge, not for the faint-hearted!

Running has become an incredibly popular way for supporters to fundraise so we are delighted to be associated with the inaugural Healthspan Porthcawl 10k and Barry Island 10k as charity partners. Both events were fantastic, with participants falling in love with the setting of both of these beachside runs.

the visitor’s spirits were never dampened. We even had a visit from Leigh Halfpenny, Jess Tumelty and Lily! The Fun Day is an ever-popular occasion that allows supporters a glimpse into each aspect of our world, showcasing the essential service we provide while also focusing on the fun we have while doing it.

Attention turns to a brand new event for 2019, Tread & Trail, where participants will be tested in either a 15 or 30 mile cycle around the hilly roads of the Brecon Beacons, broken up by a hike up the iconic Pen-y-Fan. At time of writing, the event is just around the corner and we can’t wait!

We went all PT Barnum at this year’s Tŷ Hafan Family Fun Day. The circus theme brought the grounds to life and, while the unthinkable happened – a rain shower on Fun Day day –

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conjoined destiny Over the last 18 months, we’ve been lucky enough to get to know two very special little girls, conjoined twins, Marieme and Ndeye. Born in Dakar, Senegal, the girls have endured an incredibly difficult journey on their way to Cardiff with their father, Ibrahima.

two, putting more strain on Ndeye’s heart. This led to the dilemma of whether the girls could be and should be separated. But recent CT scans show they are both dependent on each other for staying alive, so separation is no longer an option, allowing the girls to grow and develop naturally.

The twin’s story has been told elsewhere, most noticeably in a heart-breaking documentary from BBC2 that delves into the impossible decision surrounding their separation that Ibrahima had to face. It is hopeful and heart-warming, desperate and devastating.

"When Ndeye sees me doing the dishes, she says 'poor daddy', which makes me laugh so hard. And when Ndeye is crying, Marieme will turn to her and say, 'Shhh, noisy!"

But in spite of the hardship the family has endured in searching for the support they so desperately need, we have two girls who have such a delightful presence and love of life.

The girls each have their own heart and lungs, and share a liver, bladder and digestive system. But for all the girls share, they are so different. Marieme is the quiet one, head strong and cheeky.

Ndeye is playful and mischievous.

The family have been in Cardiff for 18 months now and are enjoying a period of stability in their life which has given them an opportunity to just be children, to play and develop. They are constantly surprising their medical staff with their progress to the delight of everyone who knows them.

The big question surrounding the twins has always been the ethics surrounding their separation. It was thought that Marieme was very much dependent on Ndeye, as her heart is the weaker of the

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“My girls continue to grow and bring me so much joy. Their speaking is coming along, and they can move with greater independence,” Ibrahima said.

Marieme and Ndeye attend playgroups and their mobility is improving. They can’t walk yet, but it isn’t out of the question either.

They love their visits to Tŷ Hafan and have spent many hours in the playroom testing their arts and crafts skills. They are interested in everything and investigate whatever they can get their hands on, the more sparkly the better, before invariably throwing whatever it is across the room to hoots of laughter. They might also be one of the main reasons that Baby Shark became one of the most played song of 2018. They certainly love to sing it.

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Watching them getting stuck into an activity like icing biscuits, only for one to get bored before the other and push them both away from the table, again to the sound of laughter adds an extra element of entertainment.

Perhaps one of their most endearing traits though is the way that their faces never fail to light up when their dad walks into the room. But for the man who has sacrificed the life he knew, there isn’t a greater gift.

“I have found out through their lives what life is. My girls are warriors and the world needs to know this.”

“For me, I need to know, in my heart, that I have done everything for them, provided them with safety and the best possible healthcare. When I look in the mirror, I need to be at peace. Beyond this, I have no control.

“The future is uncertain but my girls battle every day for life and I feel very blessed.”

Ibrahima has also set up a foundation to help other children in need. He said: "With all we have been through, I can't close my eyes to other children with disabilities and complex needs. So I am setting up a foundation for the girls, in conjunction with Tŷ Hafan children's hospice, called Conjoined Destiny.

"If the situation gets worse and they don't make it, I want to put something in place for them to leave a footprint in the world despite our humble and difficult beginning ...” " ... And if they grow to see it, they will know how inspiring their lives have been."

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keeping it in the family It’s said that running a marathon is your victory lap after months of training and the same is true of T ŷ Hafan. Opening the hospice was the culmination of so much hard work by a number of dedicated supporters, led by our founder Suzanne Goodall.

One such supporter that has been with us since before it all began is Shop Manager of our Cardigan store, Diane Lloyd, and she’s turned it into a whole family affair.

Our story with Tŷ Hafan started when Julian, my husband, brought home a badge of a brick from a shop in Bridgend that he’d been delivering to. Tŷ Hafan was selling the badge to help raise funds when the hospice was first being built.

At the time, my in-laws, Heather and Bernard, ran a classic car club in our local area. For the last two years, they’d been raising money to buy a small battery car which they gifted to two local hospitals for the children to drive themselves to the operating theatre. The pin that my husband brought home felt like a good sign that Tŷ Hafan should be the charity we would raise money for the next year which we were able to do.

Throughout the process, we learnt more about the hospice, at the time a building site, and met Suzanne and all the wonderfully dedicated people who were involved with getting Tŷ Hafan built.

Presell Old Vehicle Enthusiasts, my in-laws car club, organised countless fundraising events at village carnivals and vintage car shows across west Wales.

We ran a stall in Cardigan Market and each year we held a Christmas dinner with raffles and auctions. We presented the money raised throughout the year to Suzanne Goodall who supported us throughout our whole fundraising journey.

After a few years, the retail team at Tŷ Hafan came to look at a shop in town and asked whether I would like to be the manager. At the time my daughter was only three so I decided to try for the deputy position.

The market stall was closed and the ladies who had been running it joined the volunteer team at Cardigan shop. Included was my mother-in-law Heather and my mum Pat. 15 years later, we’ve seen lots of changes in staff. I became manager of the Lampeter shop in 2008 after being deputy of Cardigan for four years. I was also manager of both shops from 2011 up until 2016. We’ve also seen a lot of changes in shop size. However, Heather, who started it all, and my mum have been a constant presence throughout it all.

Family is definitely an important thing to us in the Cardigan shop. As soon as my daughter, Emily, turned 16 she started volunteering and my son James helps out when he can. Julian also works very hard helping out with any jobs that need doing and was an essential part of out recent refit. Two years ago Amy joined the Cardigan team when she became Deputy Manager and after working with us for 18 months, my son finely asked her to go for a walk on the beach.

Their wedding is in May 2020!

We are very much a family shop, the volunteers who I’m not related to feel like family. We all have one thing in common, we care and work hard to raise money and awareness of T ŷ Hafan.

“We’re delighted and Taff’s Well are a lovely, friendly club.”

- Neil Warnock, Cardiff City manager

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www.tyhafan.org

autumn 2019

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17

cwtch

our news and stories from t ŷ hafan

029 2053 2199

www.tyhafan.org

fundraising noticeboard It seems that whatever fundraising challenge you can think up, our amazing supporters are raring to take it on! Thank you all so much for everything you do to help raise money for Tŷ Hafan families. Every penny makes the world of difference.

s incredible journey The Welsh Wolfpack’

sully friends of ty hafan celebrat

e 25 years

Sully Friends of Tŷ Hafan first hear d of Tŷ Hafan 25 years ago when Suzanne Good all came to talk to the local women’s group in the village. They were blown away by her vision. This year they celebrated their 25th anniversary with a Ball, raising an incredible £9,210.

250 key players with over Welsh international hoc ys, n them, Natasha, Car wee bet s cap al tion Interna Sport Wales National from led cyc , Lisa and Sophie raising 400 miles to Antwerp, Centre in Cardiff over se us because their cho y The an.

Haf ŷ T £2,511.34 for ditioning Coach is Dan former Strength and Con Forbes, Felix’s dad.

Keith’s battle

of attritio

n Keith James ne eded a challen ge to replace of Attrition, a 10 the Arc 0 mile winter Ultra Maratho he sadly miss n, that ed through illn es s.

Four laps arou The replacem nd the Newpor ent? t Marathon in His heroic effor one go! t saw him sm ash his fundrais target, raising ing £1,523.31 for Tŷ Hafan.

TBC Another all star

effort

ice at the rs returned to the The Tŷ Hafan Allsta ment in rna tou y cke rs ice ho out for UK Charity Allsta teams battling it ty ari ch ht eig h ible Cardiff, wit phy). Their incred tro a d an (oh hts bragging rig –ice performance, on ir the ed tch fundraising ma ŷ Hafan. ing £17,000 for T raising an amaz

18

Soaring past fundraising target Steve Harris, managing director of Nuvias UC, took to the skies to raise funds for Tŷ Hafan. His bravery raised over £6,000 in sponsorship which means that the company has now donated over £40,000 to date. Thank you Nuvias for your much appreciated and continued support.

A double celebration

After pledging to rais

e £10,000 in ten mo nths for Tŷ Hafan, studen ts at Castle School in Pembrokeshire were delighted to reveal the final amount raised was a remarkable £13,011 .86! 2019 also marks their 10th birthday and studen ts and teachers got stuck into their ‘Ten Month Cha llenge’.

autumn 2019

For more from Tŷ Hafan, sign up to our e-newsletter, A Little Cwtch

There is always something special happening at Tŷ Hafan and 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 know 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.

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

looking for a truly life-changing challenge?

Celebrating

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y

0

e a r s

21 - 29 March 2020

Join us in Cambodia for a trek of lifetime and help us to make sure a short life is a full life for children in Wales Sound interesting? For more information, visit tyhafan.org/cambodia or email james.dhale@tyhafan.org