Tŷ Hafan Cwtch – Spring/Summer 2016

cwtch

newsletter spring/summer 2016

our news and stories from tyˆ hafan

where a short life is a full life inside

sophie's story p.6

t yˆ hafan kicks off christmas p.9

thomas carroll pay for a day p.16

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welcome Welcome to the Spring/Summer edition of Cwtch.

At Tyˆ Hafan, we pride ourselves on doing things that little bit out of the ordinary, things that you probably wouldn’t expect, and this is why being part of the Tyˆ Hafan family can be so much fun.

Those who are unfamiliar with Tyˆ Hafan and the work we do would be forgiven for thinking that it is a sad place. After all, Tyˆ Hafan is a children’s hospice. But from the moment you make your way up the drive and see children playing on the swings, before walking through the entrance to the hospice itself and being welcomed by smiling faces and bright and brilliant colours, you know that it is so much more.

Tyˆ Hafan is a fun place that is full of joy and every day we aim to make new memories for our families to cherish.

We hope that this edition of Cwtch will give you an impression of how Tyˆ Hafan can change a family’s life in all sorts of positive ways. Without our fantastic supporters, we simply couldn’t continue to provide the very best of holistic palliative care for all the children and families in Wales that need us.

Your support means everything to our families and, for that, we can’t thank you enough.

contents state-of-the-art upgrade for sensory room...............................................02 commemorative sculpture pays tribute to supporters...........................04 emporium opens in cardiff’s royal arcade................................................05 sophie’ story........................................................................................................06 tyˆ hafan kicks off christmas............................................................................08 santacopter........................................................................................................09 peter pan - tyˆ hafan style................................................................................09 pirates of pendine..............................................................................................10 osian’s story.........................................................................................................12 bereaved mum takes to the catwalk to thank charity.............................14 tyˆ hafan celebrates hospice care week......................................................15 thomas carroll pay for a day...........................................................................16 sami ameobi draws christmas raffle winner............................................18 crackerjackpot.....................................................................................................18 a massive thank you.........................................................................................19 sportradar connect 2015................................................................................20 fundraising from 12,000 feet..........................................................................20 a fundraising mission.......................................................................................21 champagne at the castle................................................................................21 a brutal challenge.............................................................................................22 please help us continue to be there............................................................23

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

state-of-the-

sensor

spring/summer 2016

-art upgrade for

ry room

The children who use Tˆy Hafan’s services have a range of complex conditions, meaning many will miss out on the benefits that regular play can provide in their development.

The sensory room has been a fantastic addition to the hospice and enables children with varied needs and abilities to develop through play.

Having been well-loved and well-used over the years, it became a growing necessity to upgrade the sensory room to match the demand. Thanks to the generosity of our corporate supporters, which includes a grant for £31,434 from HSBC, secured through the hard work of bereaved father and HSBC employee, Gary Footman, and an incredible donation of £27,055 from Dow Corning, the sensory and soft play rooms have seen an extensive refit.

The rooms are equipped with new patient hoist equipment and air conditioning to allow everyone the opportunity to use

the fantastic facilities. The Magic Mirror, a camera system activated by the smallest movement, a Magic Carpet, where interactive games and images are projected onto the floor and controlled by movements over the image, and a new and improved soft play area are the highlights of the new look rooms.

Thank you to all our amazing supporters who contributed to the funding of the refit: Freemasons Grand Charity, Ladbrokes Charitable Trust, Dow Corning, HSBC Group, Corporate Sustainability, IMO AJ Evans, Kier Construction, Lloyds Bank Community Foundation and Phoenix Children's Foundation. Your contributions will make a huge difference to the lives of the children who use our services.

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

commemorative sculpture pays tribute to supporters We were honoured to unveil our Gift Tree, a commemorative sculpture that pays tribute to the corporate, group or individual supporters who have raised over £10,000.

Carys Boggis, five, from Aberdare, and her brother Rhys, 13, who has been supported by Tˆy Hafan since 2007, officially unveiled the Gift Tree for us.

Every donation of £10,000 or more will now be marked with a handcrafted gold, silver or bronze leaf on the wall-mounted artist-designed Gift Tree at the hospice. Each leaf will carry a bespoke inscription with the donor’s name.

The first 21 leaves attached to the tree represent an incredible total of £349,456 raised by families associated with Tˆy Hafan.

This includes individual donations, fundraising donations from the hospice’s Dads’ Group and contributions from individuals associated with Chefs’ Night Out events.

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Carys and Rhys’ dad Anthony, who has been involved with a number of fundraising activities with the Dads’ Group, including the welsh3peaks challenge, said: “We come here as a family to stay. Our respite is being away from our home and hospitals and all the things we have to deal with.

“It’s amazing to have a leaf on the Gift Tree and for Carys to be launching it. I’m really proud of that.”

It costs £4m every year to provide the care, comfort and support to our families at the hospice and our support services out in the community. To make a donation, please visit www.tyhafan.org/donate.

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“This really is a charity shop with a difference, designed with vintage style – making it unlike anything Cardiff has seen before.”

Matt Williams

“It’s such a beautiful store with so many great items for sale.

It’s wonderful to see so many people supporting the shop and I will definitely be coming back.”

emporium opens in cardiff’s royal arcade

Dawn Higgins from Dressmeperfect.com

Cardiff’s wonderfully atmospheric Victorian arcades are a really unique feature of the Welsh capital and locals and tourists alike spend hours exploring all their nooks and crannies. This made the Royal Arcade the perfect spot to open Tˆy Hafan’s third boutique Emporium shop in the autumn.

Emporium has garnered attention from bloggers to awards voters for its unique take on the charity shop formula, with a focus on niche items, from vintage sewing machines and typewriters to designer outfits and shoes. The innovative nature of Emporium was a key reason for our success in winning the Retail Business of the Year award in the South Wales Business Awards in September.

17-year-old Victoria Godwin from Whitchurch was our very special guest and cut the ribbon at the official opening of the shop, before being the first customer to grab a bargain a couple of classic vinyl records.

Victoria, who has been coming to Tˆy Hafan for six

years, was born with Down’s Syndrome and suffers from Dilated Cardiomyopathy – a severe heart condition which means she tires very easily and sometimes needs a wheelchair to get around.

Victoria’s mum, Nina, said: “Tˆy Hafan started helping us at a time when we were at our lowest. Victoria, who was 11 at the time, was too ill to go to school so Tˆy Hafan supported us with music and play therapy at home and have been there for our family ever since.

“Victoria loves staying at Tˆy Hafan and has made some great friends, including her best friend, Kate, who also uses the service. It gives her a chance to have her own independence and she is able to enjoy time

away to do normal teenager things.”

Victoria said: “I love Tˆy Hafan because I can have sleepovers with my friends and we have lots of laughs and fun.”

Sadly, Victoria’s heart condition is incurable and doctors are unable to predict what will happen in the future.

“We just live day by day and try and make life as comfortable and as happy as possible for Victoria,” said Nina.

Donating your pre-loved items and shopping in our stores really does help us to provide care and support to children with life-limiting conditions and their families.

volunteers needed There might not be a more important group of people to Tˆy Hafan than our incredible superstar volunteers. If you are interested in joining our team, please contact us on 029 2053 2199 or visit www.tyhafan.org/volunteer.

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

sophie's story Jane and David Lewis remember the day in 1999 when their little baby girl, Sophie, was born as the happiest day of their lives. Following a normal pregnancy, but a horrendous three-day labour that ended in a C-section, the couple were able to take Sophie home to Leckwith in Cardiff.

“We came home with our little bundle of joy and enjoyed a blissful 15 weeks”, said Jane. “Sophie, in those early weeks, was a wonderful baby. She fed well and slept well, everything was bliss. I can honestly say I had no concerns whatsoever.”

But when Sophie was 15 weeks old, out of nowhere, she suffered her first seizure.

“The day she had her first seizure changed me completely. I can honestly say I’m a different person now,” said Jane.

“The fear grips you inside. It was the first time I had seen anyone have a seizure and I was watching my daughter go through it.

We were in the car and she was in her car seat asleep at the time. I was screaming at my husband and we drove straight to the hospital.

“We arrived, and when we were called in to see the doctor, she started fitting again in my arms. Needless to say we were admitted straight away, and we made that hospital our home for the next four months.”

Over the following days, Sophie’s fits continued. And during one day, she suffered more than 50 seizures.

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“Every test came back as normal so, because of this and being young and naïve, I just assumed they would get her medication sorted and we would get home and enjoy things again,” said Jane. “Little did I know the seizures would still be dominating our lives 16 years later.”

Sophie has since been diagnosed as one of only around 50 people in the UK with a rare genetic condition called CDKL5 that causes seizures and severe developmental issues. The family were referred to Tˆy Hafan in 2004, when caring for Sophie’s complex needs was becoming increasingly more difficult, especially as Sophie now had a little brother, two-year-old Thomas.

David said: “Tˆy Hafan has been incredible. It has been hard at times, but their support makes life a lot easier. They look after all of Sophie’s care needs when we visit so we can have a rest and do normal things like go out for a meal or go on holiday.

“Sophie has a fantastic time at Tˆy Hafan. She loves the sensory room and the hydrotherapy pool and our other two boys love it there as well.”

spring/summer 2016

“Sophie has a fantastic time at Tˆy Hafan. She loves the sensory room and the hydrotherapy pool and our other two boys love it there as well.”

Sophie is now 16 years old, but her condition requires 24-hour care and she is unable to walk or talk. Despite her difficulties, Sophie brings so much happiness to her family and the staff at Tˆy Hafan love to spoil her when she visits.

Jane and David are both great supporters of Tˆy Hafan and have taken part in many fundraising opportunities over the years. Jane has done some volunteer work helping in the fundraising team during Christmas and David, who works for Tesco, wrapped a huge stack of Christmas presents donated by his employer to the hospice during the Christmas period.

David also took on Tˆy Hafan’s Half Taff Trail Cycle Challenge, a cycling challenge starting in Merthyr Tydfil and ending up in Cardiff, with his team, The Tesco Trailers.

He said: “I really enjoyed taking on the Taff Trail Cycle Challenge and was really pleased that I was able to give something back to help other families.

We are already planning to complete the full route next year and are even thinking about doing the Tˆy Hafan welsh3peaks challenge next June as well.”

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

t yˆ hafan kicks off christmas We have said it before, but Tˆy Hafan knows how to do Christmas and last year, we might just have done it better than ever before!

The inaugural Carols at the Castle kicked Christmas off perfectly with joyful sing-alongs, a visit from Santa Claus himself, a little snow and a dramatic fireworks display.

The magnificent 11th century Norman keep provided an incredible backdrop for the event and three fantastic amateur choirs, Affinity Choir, City Voices Cardiff and the Sing and Inspire Superchoir, took to the stage to keep us all in tune. Each choir performed a handful of their own arrangements of classic Christmas songs, from White Christmas and The Twelve Days of Christmas to Santa Claus is Coming to Town and Must Be Santa.

Russell Jones from Only Boys Aloud also performed a Christmas cracker of a set for an audience of 2,000 all getting into the festive spirit.

The event was extra special for Ian Reiffer, whose son, Lewis, 16, regularly attends Tˆy Hafan, having been diagnosed with a severe form of epilepsy when he was just a few months old. Ian works as an Operations Assurance Manager at Arriva Trains Wales and was delighted when his employer chose to sponsor the event.

Ian said: “It’s fantastic. I’m really chuffed that we’ve got to this stage. It started with bike rides and we’ve been building the relationship with Tˆy Hafan since then. It’s an important part of the community and community work is really important to us at Arriva.

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“Lewis has Lennox Gastaut Syndrome. He was developing well as a baby, then when he was four months old, he started having small seizures. After lots of tests, the consultant told us the spasms were very serious and Lewis had a severe form of epilepsy, which had caused damage to his brain.

“Now Lewis is 16 but mentally he’s probably one or two years old.

He can’t communicate but he’s a lovely kid, very happy.

“We tend to have a long weekend break at Tˆy Hafan. It’s great – Lewis lights up every time he goes there. He loves the sensory play room and the pool.

His sister Lauryn used to go to the siblings’ group every month but she’s got a very busy schedule these days!”

Carols at the Castle was such a huge success that we are already looking forward to returning to Cardiff Castle in 2016 and making our ‘official’ start to the festive season a Cardiff tradition.

spring/summer 2016

santacopter Our children and their families received an extra special Christmas present the day before Christmas Eve. Santa Claus took a brief few minutes off from his preparations for his Christmas Eve's adventures to visit the hospice and meet the families.

But instead of using his tried and trusted means of transport, he allowed the reindeer a few extra hours of rest and opted for a Wales Air Ambulance helicopter!

Everybody loved Santa’s dramatic entrance and it was such an exciting day for everyone who was there, so we’d like to thank Wales Air Ambulance for lending Santa your helicopter.

peter pan tyˆ hafan style Now a Tˆy Hafan tradition, last year’s panto was our own unique take on the Peter Pan story. It had it all – a mischievous Peter, a menacing tick-toc-croc, famous musical stars playing cowboys, ex-rugby internationals playing lost girls and one of the most interesting portrayals of Tinkerbell you are ever likely to see unless you imagine her as standing 6’3” and sporting a fetching tattoo sleeve.

Watching Welsh cap Ian ‘Wendy’ Gough be kidnapped by the dastardly Captain Hook, while Peter and the lost... characters, including ‘Cowboy’ Connie Fisher, negotiated their rescue, was undoubtedly a highlight.

Santa was, of course, on hand to deliver some wonderful presents to the children in attendance, donated by our incredible supporters, and it was brilliant to see so many of our corporate supporters throwing themselves into their roles.

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

pirates of pendine We have shared some amazing stories of friends, family members and employers getting involved in fundraising for Tˆy Hafan. People take part in some extraordinary challenges, be it to tackle a personal fear by sky diving or bringing a whole community together for a giant tea party.

Our favourite stories, however, have to involve the children who use our services taking part themselves.

Poppy Jones, who has quadriplegic cerebral palsy and chronic lung disease, was referred to Tˆy Hafan in 2011. She is an outgoing 10 year-old who loves to have fun and with the help of a ragtag group of her friends and family called ‘Poppy’s Pirates’, she completed our 5km rainbow run on Pendine Sands – in a bath!

“She is quite a character with a great sense of humour,”

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said her dad, Rob. “As Poppy uses a wheelchair, we thought using a bath with wheels would be a much more fun way to complete the route.

It was fantastic and Poppy was smiling and laughing the whole time.”

Poppy, from Crickhowell, has suffered many health problems over the years and there have been times when doctors didn’t think she would pull through.

“She has had a sketchy past, health-wise,” said Rob. “There have been times when it has been very touch and go and

we feel very lucky that she has been with us for the last ten years.”

Poppy joined over 1,000 other Rainbow Runners for Tˆy Hafan’s second run at Pendine Sands. Participants started the route in white and crossed the finish line covered in multi-coloured powdered paint to raise funds for Tˆy Hafan.

“Like a lot of the children that benefit from Tˆy Hafan, we have to make the most of the time we have together,” said Rob. “Tˆy Hafan allows Poppy to

be a normal ten-year-old.

She loves the banter and is made to feel like one of the girls. She’s not treated like a disabled person. She is treated like a normal girl with a great sense of humour. It’s also the only place we can go as a family to have a complete rest.”

For information on future Rainbow Runs, please visit www.rainbowrunwales.co.uk.

spring/summer 2016

“Like a lot of the children that benefit from Tˆy Hafan, we have to make the most of the time we have together.�

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our news and stories from t yˆ hafan

029 2053 2199

osian’s story Two hours after Osian Liddell was born, a rash quickly spread across his face and body. His parents and doctors feared it could be meningitis.

But tests revealed he had a rare condition called Aicardi-Goutieres Syndrome 1. Only 400 people in the world have ever been diagnosed with AGS1. Around 40% don’t survive past the age of five.

His parents, Anna, 27, and Huw, 28, who are childhood sweethearts, discovered they are both carriers of the gene causing Osian’s condition.

“We’ve known each other all our lives – we went to primary school together,” said Anna.

“Can you imagine how small the chance is of having two children in the same class at primary school, both carrying this rare gene, and those two grow up and have a child together?”

Now aged eight months, Osian needs 24-hour care to combat his growing catalogue of symptoms, which can change from day-to-day.

“AGS1 is a genetic degenerative autoimmune disorder, causing brain damage, seizures, respiratory problems, heart and liver problems,” said Anna.

“When the results came back, the doctors put a journal in front of us, pointed at an article and said we think it’s that. No one had heard of it.

“After we had taken Oshi home, it was as though he had read this article and was making his way through the list of symptoms, telling us he had AGS. We didn’t need any more tests – he had made it very clear.

“We can medicate and control and stabilise it.

But every single medication has a side effect, so we would try one thing and something else would spring up. If we sedated him, he had respiratory problems. With other medication, there were implications for his liver. We felt like we were shooting in the dark.”

Exhausted and anxious, Anna and Huw were referred to Tˆy Hafan, where they benefit from outreach visits to their home in Cardiff and short break care provided by the hospice.

“Tˆy Hafan was suggested very early on,” said Anna. “I used to work with special needs children

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so that has made it a bit easier. I already had a level of understanding. I knew we weren’t taking Osian to Tˆy Hafan to die. So I said yes to everything they offered – whatever would help Osian. We don’t want him to lose out on anything.

“Osian is very sensitive to how Huw and I are feeling. As soon as we arrive at the hospice, he seems better. It’s because of the environment everybody creates and Huw and I are so relaxed.

Oshi’s so chilled here.

“If something really small happens at home, we jump ahead thinking the worst. It helps to have people around who are calm. We trust them implicitly.

“I used to have to sleep holding Osian because if he wakes up and is startled, he can have a seizure. After our first stay at Tˆy Hafan, I felt confident enough to let him sleep in his own room.

“Staying here allows Huw and I to just be together. At home, one of us is always looking after Osian while the other sleeps – we do shifts.

That makes us feel terrible because he’s our son, he’s not a job!

“Here we can just stay in our PJs and watch TV together while someone else looks after Oshi.

Then we get excited about going to see him.

“We love the fact that our mums can come here too and just enjoy time with him without any anxiety about his symptoms or medication – they can just have a cuddle with him.

“We’ve been able to share this with our whole family – it’s important that everybody involved in Osian’s life understands what this place does.”

Tˆy Hafan has been there for families like the Liddells since 1999 and will continue to provide the very best care for as long as it is needed.

To find out about referring a child to Tˆy Hafan, please visit www.tyhafan.org/refer-a-child.

www.tyhafan.org

spring/summer 2016

“Can you imagine how small the chance is of having two children in the same class at primary school, both carrying this rare gene, and those two grow up and have a child together?�

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our news and stories from t yˆ hafan 029 2053 2199

www.tyhafan.org

bereaved mum takes to the catwalk to thank charity When parents Lee and Lucy took eight-week-old Ezra to the doctors with a chest infection, they never thought that two weeks later they would be saying goodbye to their precious son.

Ezra was born on 12 January 2015 without any complications and appeared to be a healthy baby boy. Lee Morgan and Lucy Froley from Bridgend were delighted to complete their family and give their two-yearold daughter, Bailey, a beautiful younger brother.

But a couple of months later, Ezra became poorly so Lucy took him to see their GP. Lucy said: “Ezra fell ill with a chest infection which we didn't think was much to worry about until I took him to the doctors.

After two minutes, the doctor gave him oxygen and an ambulance was called.”

Ezra was taken to the University Hospital of Wales and was put on a life-support machine.

After being diagnosed with SMA Type 1 – a rare genetic muscular disease – he was referred to Tˆy Hafan, the hospice for children in Wales.

“Tˆy Hafan took care of us as there was no cure for Ezra's condition,” said Lucy.

“Before going, I had no idea about Tˆy Hafan and what they did. They are a brilliant charity which helps children and families through the hardest times of their lives. They supported us with anything, from making us tea to talking to us and making memories happen.

“Ezra survived 24 hours after being taken off the ventilator at Tˆy Hafan. In those 24 hours, Tˆy Hafan made so many

memories happen for us – hand and foot prints of Ezra and his two-year-old big sister, and finger prints on little butterflies.

“Before Ezra passed away on 6 March we had the most fabulous and magical family day anyone in our circumstances could dream of.

All thanks to Tˆy Hafan. Nothing was hard work for them and they cooked all our family food. We could have had all our family to stay too.”

“I am so happy to take part in the Tˆy Hafan fashion show to raise more money and to make people aware of how hard things can be, and how brilliant Tˆy Hafan is,” said Lucy.

“I want to make sure everyone is aware of what Tˆy Hafan does instead of finding out like me and my family.”

As a way to say thank you, Lucy took part in a fashion show in aid of Tˆy Hafan with other mums supported by the charity.

“Being part of the Tˆy Hafan catwalk charity night was an honour and privilege. To model alongside the mothers was truly humbling as they all had their own stories and motivation but all united to support one another and the night itself.”

Matt Nolan, Guest model for the evening

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spring/summer 2016

t yˆ hafan celebrates hospice care week Children and families supported by Tˆy Hafan celebrated Hospice Care Week with lots activities including balloon-making, a tea party and some Halloween-fun!

Hospice Care Week, 5 – 11 October, is an annual week of activity to raise the profile of hospice care across the UK. The theme for Hospice Care Week 2015 was Connecting Care.

It focused on the special role hospices play in connecting with individuals and families, connecting with local communities and connecting people with each other.

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our news and stories from t yˆ hafan

029 2053 2199

www.tyhafan.org

thomas carroll pays for a day

Every day is a special day at Tˆy Hafan, one that we try to pack full of precious memories for our families. But the care and support that Tˆy Hafan provides, either in the hospice or out in the community, costs £10,958 every day.

Thomas Carroll, one of the leading business insurance agencies in the UK, has become the first of our supporters to ‘Pay for a Day’.

The Pay for a Day scheme allows supporters, either a corporate partner, group or individual, to pay for an entire day of care and make a difference to the lives of the children and families in our care.

Staff members from Thomas Carroll have been fantastic in coming up with fundraising ideas to help reach their target. The most highprofile was a group of cyclists taking on the challenge of cycling the 295 mile journey between London and Paris, covering 74 miles a day.

The team finished the gruelling challenge at the iconic Eiffel Tower.

Paul Evans, Account Manager and team captain for the bike ride, said: “Our goal was to raise over £10,000 – the cost of providing all

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of Tˆy Hafan’s palliative care services for 24 hours, not only at the hospice itself, but its work supporting children and their families in communities throughout Wales.

“We are great supporters of Tˆy Hafan’s Pay for a Day scheme and we have chosen 1 October, the anniversary of Thomas Carroll’s founding in 1972, as our special day of care at the hospice.

“Riding 74 miles a day with a team of mixed cycling experience was a challenge, but the incredible team spirit and the vital cause, pulled us through.”

Staff from Thomas Carroll joined children and their families for a party at the hospice to celebrate paying for a day of care at Tˆy Hafan.

spring/summer 2016

"Whenever I visit Tˆy Hafan, it is emotional I can’t pretend that it’s not. To see the little children running around, it draws you into it.

So to be able to pay for the services for one day is an incredible achievement."

Brynmor Williams, Group Board Director at Thomas Carroll

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our news and stories from t yˆ hafan 029 2053 2199

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sami ameobi draws christmas raffle winner Thank you so much to everyone who supported our Christmas raffle and helped us raise an amazing £75,000.

The winning tickets were drawn at the hospice on 18 December 2015 by Cardiff City FC player, Sammy Ameobi. Mrs Harvey from near Bridgend won the £3,000 top prize and visited Tˆy Hafan in January.

Our next raffle will be starting at the end of April. If you would like tickets, please email lottery@tyhafan.org or call 029 2053 2300.

One of the best parts of our Lottery Marketing Manager’s job is ringing people to let them know they’ve won the £2,000 weekly top prize.

Some of the lucky winners include Mrs Davy who scooped the top prize in our Christmas Eve draw after purchasing her winning ticket from Tˆy Hafan’s Newport shop.

Another recent winner was Debra Carr of Barry who has two very personal reasons for supporting Tˆy Hafan: her brother died when they were both teenagers and at that time there was nothing like Tˆy Hafan available. Sadly last year, Debra’s grandson became Britain’s youngest ever organ donor and has his own special stone in Tˆy Hafan’s memorial garden.

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spring/summer 2016

a massive thank you

Your kind donations support children with life-limiting conditions throughout Wales

We want to say thank you so much to everyone who donated to our Precious Moment Christmas Appeal. We had such a fantastic response, and thanks to you we raised an incredible £43,011!

We would also like to say thank you for the Christmas wishes and heart-felt messages you sent back on Macsen’s and his brother Ioan’s fantastic Christmas tree decorations.

We were completely overwhelmed with the messages of support. We put them up on the hospice Christmas trees for families, staff and visitors to read and they brought lots of smiles to people’s faces.

Your kind donations mean we can continue to support lifelimited children and families like

Macsen’s all across Wales.

Matthew and Lisa, Macsen and Ioan’s parents, kindly shared their story and explained that with Tˆy Hafan’s wonderful support they were finally given a chance to be a family again.

Macsen has severe cerebral palsy and has seizures every day. On a bad day he can have up to 40 seizures. He needs to be looked after 24 hours a day. Before the family found Tˆy Hafan, they were truly exhausted and doing simple things like popping to the shops or going to the park were impossible.

After struggling on their own, they were soon surrounded by people they could trust with Macsen. When they have short breaks at Tˆy Hafan they can go out for meals and take Ioan on daytrips to Cardiff. Lisa said: “Every time we leave Tˆy Hafan, we always say how nice it was to be normal again.

“The boys love their stays at Tˆy Hafan and Macsen loves the fuss he gets. He recognises the staff and he beams when he is around them. Ioan is part of the Super Siblings group, where he has fun and gets to play like

any other seven year old. It’s his opportunity to feel special.”

Lisa and Matthew said it is hard to imagine what their lives would be like without Tˆy Hafan’s support. Thanks to your generosity, we can continue to support families in Wales, like Macsen’s, and help them to enjoy time together as a family and experience the simple things in life.

Thank you.

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our news and stories from t yˆ hafan

029 2053 2199

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sportradar connect 2015 Sports data experts, Sportradar, held their annual Leaders Meeting & Charity Golf Event in the Celtic Manor resort, raising over £28,000 for Tˆy Hafan. Over 100 guests attended the two day event, hosted by the Celtic Manor Resort, including some of sport’s leading figures and organisations from around the world.

The multinational company, with an office in Usk, holds the event in a different country each year, raising money for two charities, one international and one local. The players took to

the Twenty Ten course to raise money for Tˆy Hafan and Right to Play.

Louise Copping, Usk office manager said: “We were excited to hear that the annual event would be coming to Wales, knowing that we would be able to support a local charity. Tˆy Hafan is such an amazing charity, offering a unique service and special place for families at incredibly difficult times. We were delighted to be able to support them.”

find out more about how your business can build a partnership with ty hafan at www.tyhafan.org/become-a-partner

fundraising from 12,000 feet Greenmeadow Golf Club has supported us since 2014 and raised over £7,500 through charity golf events, raffles and quizzes.

Alan Miskelly, a member of Greenmeadow, raised the stakes when he took to the skies to help raise over £2,000 by doing a skydive for Tˆy Hafan.

At 72 years of age, Alan jumped from 12,000 feet in his first ever tandem skydive, falling for nearly a minute at over 110 miles an hour.

The president of Greenmeadow Golf Club, Lyn Thomas, spoke of his pride in helping the charity with the club’s fundraising endeavours: He said: "I am very proud of the way the members of Greenmeadow Golf Club have taken Tˆy Hafan to their hearts and dug deep to support this amazing charity.”

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spring/summer 2016

a fundraising mission St Mary’s Church in Tenby has been a fundraising juggernaut this past year. Their Advent concert, a special ‘come and sing’ performance of Handel's Messiah, was a huge success, raising £1,195. Their Hand Bell Ringers also managed to raise £1,000 by holding a series of ‘Turkey and Tinsel’ concerts and an

incredible £6,400 was raised by donations from the public for lighting tea lights in the church.

Rector Andrew Grace and the church have been incredible supporters of Tˆy Hafan for many, many years and we sincerely thank them and look forward to their continued support.

photo: gareth davioes photography (fb and @gdptenby)

champagne at the castle Welsh fashion wholesalers, Goose Island, held a summer champagne event at Oystermouth Castle in aid of Tˆy Hafan.

280 guests enjoyed an afternoon and evening’s entertainment, including jazz music, gourmet food and dancing, with raffles and auctions to help raise funds.

Having visited Tˆy Hafan in the summer, Goose Island’s Managing Director, Karen Hutchings, felt compelled to support us when she learned that it costs £10,958 a day to run our services.

The event was a huge success and Karen, along with her husband Peter, presented us with a cheque for over £20,000. A huge thanks to everybody who helped make the event such a resounding success.

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cwtch

our news and stories from t yˆ hafan 029 2053 2199

www.tyhafan.org

a brutal challenge

No challenge is too small when it comes to fundraising for Tˆy Hafan. Every person who dons fancy dress, holds a tea party or jumps from a great height in the name of Tˆy Hafan is our hero.

Sometimes, however, we catch wind of people who decide to push themselves to extraordinary limits, which leads us to ‘Ironman’ Willie.

Mark ‘Willie’ Wilson has always had an interest in multi-sports and has competed in various triathlons and the odd Ironman race over the years. About 18 months ago, Willie decided that an ultra-distance race would be a good idea before the potential that a planned operation could stall his triathlon career.

The race in question was the Brutal Events Double Ironman distance race that takes place in Snowdonia. The name hints at what lies ahead, but only when learning what the challenge is, do you truly appreciate its scope.

A 4.8 mile swim, a 232 mile bike ride and a 52 mile run - all to be completed in 42 hours or less!

Willie set out to raise £1,000 for Tˆy Hafan, but has managed to more than double his target at over £2,700.

Willie said: “I ensured that the training didn't engulf my life,

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as I made a conscious effort to not take any time away from my family time at weekends or weekday evenings - I always attempted to be home to bath my two-year-old daughter, Ruby, and put her to bed. I never did more than 20 hours of training per week, averaging 13-15 hours a week.

“Five weeks prior to the race, I drove up to Llanberis, arriving at 10pm and slept a few hours in the back of the van prior to getting up early at 4am to complete two laps of the bike course - I wish I had taken a camera because the sunrise was stunning. I went for a quick blast up Snowdon, but on the way back down, I badly bruised my ego and my hip, shoulder and knee when I fell, trying to overtake some slow moving tourists. This caused me five weeks of worry as the pain in the hip flared up on every run, bike and swim and I had already raised over £1,500 for Tˆy Hafan!”

Fortunately, Willie recovered in time and, with the help of his fantastic support team,

Caroline and Mark Livesey, Ian Mugglestone, Tony Ireland and Tony Aspeden, and, of course, wife Cathy and daughter Ruby, completed this epic challenge.

“The event was non-stop against the clock and I completed it in just over 36 hours finishing a surprising fifth overall as I wasn’t sure I’d make the 42 hour cut off!

I did all this to highlight the great work Tˆy Hafan does and to raise much-needed funds.

“I was so impressed with the care, love and fun that all the staff bring to Tˆy Hafan, I promised myself that I would try and complete the event with a smile on my face the whole way, to reflect the positivity that all staff, families and children at Tˆy Hafan bring. I knew that my small amount of discomfort was nothing like that of those in the loving care of Tˆy Hafan – so it was easy to do!”

Tˆy Hafan would like to thank Willie, who has since become a Tˆy Hafan Charity Ambassador, and each and every

one of our fantastic supporters who go above and beyond to help us support the children and their families in our care.

Willie will be running the London Marathon, Titan Man (Brecon’s Hilly Long distance triathlon), Midnight Mountain Marathon (over the Brecon Beacons), Challenge Roth (Ironman Distance race) and the Alpe D’Heuz Long distance Triathlon for Tˆy Hafan, so we wish him great luck in all his future fundraising adventures.

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