Tŷ Hafan Cwtch Newsletter Autumn/Winter 2014

cwtch

newsletter autumn/winter 2014

our news and stories from tyˆ hafan

play time at t yˆ hafan inside 15 years of being there

new playground opens with desert island theme p.3

heroes assemble for children’s hospice week p.6

precious moments appeal launched across wales p.10

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welcome Welcome to the Autumn/Winter edition of Cwtch. It has been an incredible few months at Tyˆ Hafan. One of the many highlights was during Children’s Hospice Week, when one of our families officially opened our state-ofthe-art adventure playground. It was such a joy to see the excitement and delight on the children’s faces as they explored the new facility, and we can’t thank our supporters enough for making it possible.

We believe that every child has the right to play. In this edition, you will discover how play makes a tremendous difference to the lives of life-limited children and their families from across Wales. This service is delivered in many different ways, both at the hospice and in the community, and is incredibly beneficial to help children express themselves and communicate in ways they may not have experienced before.

Read all about our National Play Day celebrations and learn about our Precious Moments Appeal, which features a very special little girl called Alice and her inspirational family.

It fills me with great sadness that I will be stepping down from my CEO duties in September 2014, however, I am confident that Tyˆ Hafan will continue to go from strength to strength with the talented and passionate team that always go the extra mile to ensure we provide families with vital comfort, care and support.

As my final word, I would like to thank our wonderful supporters, who not only helped start Tyˆ Hafan 15 years ago, but continue to give generously so we are there for families when they need us most. You are a crucial part of team Tyˆ Hafan and we couldn’t do it without you.

Thank you for caring.

Ray Hurcombe Chief Executive

contents

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new playground is ‘a dream come true’ ................................ 03 tyˆ hafan celebrates national play day .................................... 04 family day care ......................................................................... 05 heroes assemble for children’s hospice week ...................... 06 15 year anniversary events....................................................... 08 8 years at the helm................................................................... 09 alice in wonderland family fun day ........................................ 09 precious moments appeal........................................................10 rhys’ story – living with DMD ....................................................12 tyˆ hafan launches first welsh rainbow run .............................14 colin charvis tackles welsh three peaks ..................................15 cyclists’ epic trek to five capitals ...............................................16 become a superstar volunteer.................................................. 17 lucky winner scoops £12,000 lottery rollover jackpot ............18 summer sunshine raffle.............................................................19 tyˆ hafan boutique opens in abergavenny ............................. 20 special guests open our 27th shop in haverfordwest............21 katie’s story................................................................................. 22 please help us be there for another 15 years......................... 23

’a drea Every child has the right to play!

newsletter autumn/winter 2014

new playground is

am come true’ Children’s Hospice Week (13-20 June) was extra special this year as it saw the official opening of our new desert island-themed playground.

The entire space is accessible for wheelchair users and includes a race track, wheelchair trampoline, wheelchair see-saw and bespoke lighthouse. Other features include a water activity station, wheelchair swings, slides and a sunlight tunnel.

Lewis Smith and his mum Nichola from Llantwit Fardre were thrilled to cut the ribbon and officially open the playground, overlooking the Bristol Channel.

Five-year-old Lewis suffers from Tuberous Sclerosis, a rare genetic condition causing tumours to develop in different parts of the body, and was referred to T yˆ Hafan in 2010.

“The playground is a dream come true for children in wheelchairs,” said Nichola.

“It is fantastic for Lewis as it allows him to experience lots of

movement which helps to relax and soothe him. It is also a wonderful facility for his sister, Holly, as it is something they can enjoy together.”

T yˆ Hafan’s Director of Care, Jayne Saunders, said: “This new facility allows children of all abilities to enjoy the excitement and therapeutic benefits of a playground. We are incredibly grateful to our wonderful supporters for funding this fantastic facility – it will make such a difference to the families we support.”

Barclays Wealth, Co-operative Employee Benefits, Dow Corning, The Freemasons Grand Charity, J L Harrison Enterprise Fund, Making a Difference Locally Ltd, Mumbles Community Council, Real Radio, Ortho-Clinical Diagnostics, The Waterloo Foundation and The Chloe Bigmore Trust all made significant donations towards the £250,000 project.

It includes a race track, wheelchair trampoline, wheelchair see-saw and bespoke lighthouse

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tyˆ hafan celebrates

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national play day Families supported by Tyˆ Hafan enjoyed a day filled with bubblemaking, bug-catching and denbuilding to mark National Play Day on 6 August.

There was plenty of fun and laughter at the hospice, as life-limited children and their siblings took part in several outdoor activities including sky walking – an activity using mirrors to reflect images of the sky.

Specialist play workers delivered wheelchair art sessions for families who also enjoyed spending time in Tyˆ Hafan’s new playground (see page 3).

Dong Luo’s three-year-old daughter, Carol, was one of many children who enjoyed the day. Carol, from Cardiff, suffers from Congenital Central Hypoventilation and was referred to Tyˆ Hafan when she was eight months old. Carol and her family received short break care at the hospice when she was a baby and have been enjoying day care sessions at the hospice ever since.

Mrs Luo said: “Carol was so excited when we told her we were going to Tyˆ Hafan for the day! Play is really important for Carol and the staff at Tyˆ Hafan are excellent at identifying the activities that suit her individual needs.”

Hannah Williams, Tyˆ Hafan’s Care Services Team Leader, said: “It was wonderful to see families gain confidence to try new and different types of play which they may not have experienced before.

“Our approach to play is not focused on what a child cannot do; instead, we encourage them to discover what they can do. Play is a right for every child and is important in helping a child to express themselves and reach their full potential.”

Play is a right for every child and is important in helping a child to express themselves and reach their full potential

Play Day is the national day for play in the UK, traditionally held on the first Wednesday in every August. As well as a celebration of children’s right to play, National Play Day is a campaign that highlights the importance of play in children’s lives.

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newsletter autumn/winter 2014

family day care We are always looking at new ways to meet the needs of lifelimited children and their families.

Five years ago we set up a Family Day Care service for a group of children unable to access school due to healthcare reasons.

This popular service has now evolved to cater for an increasing number of younger children in our care.

Over the last few years, the average age of a child referred to our services has fallen from 11 to four years old.

Family Day Care now very much reflects this change as all the children using the service are pre-schoolers, with many of them under two.

The sessions allow children to interact and play together and give parents the opportunity to meet other families facing similar circumstances.

Tracy Jones, T yˆ Hafan’s Lead Practitioner of Community Palliative Care Services, said: “Over the years the service has evolved and is so popular we now have to run two sessions a month to accommodate all the families.

supported by at least one nurse and other staff as needed.

“Our Complementary Therapists are always on hand to offer treatments to the parents and a Music Therapist enables the children to have opportunities to express themselves through music. A Family Support Practitioner is also available for families if they want emotional or practical support.”

She added: “The day is always busy and packed full of fun activities. The smiles from the children and the families at the end of the day tell us that this is a service that really works for them.”

thank you A big thank you goes to the Association for the Welfare of Children in Hospital (AWCH) for this very generous gift which will enable us to provide support to more families.

Family Day Care offers opportunities for families to come together at the hospice

T yˆ Hafan has recently benefitted from a substantial donation which will enable us to run a pilot project supporting families who need transport to access services, such as Family Day Care. A big thank you goes to the AWCH Fund for this very generous gift.

“Family Day Care is a whole team collaboration and is facilitated by our dynamic and energetic Play Practitioners,

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e l b m e s s a s heroe n a f a h ˆ y t t a Families supported by Tyˆ Hafan donned their capes, masks and superhero costumes for a very special Children’s Hospice Week party.

The hero-inspired week was the annual UK awareness and fundraising week for children’s hospice services. With the theme of heroes, the week celebrated local children’s hospices which, just like superheroes, are there for people when they need them most.

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Balloon making, face painting and game playing were just some of the activities enjoyed by families, followed by an Alice in Wonderland tea party and disco.

The public also got involved by tweeting superhero poses.

newsletter autumn/winter 2014

school children are children’s hospice week heroes!

One of the many schools that fundraised for Tyˆ Hafan during Children’s Hospice Week was Willowbrook Primary School in Cardiff.

Schoolchildren swapped their uniforms for capes and fairy costumes and raised £250 for Tyˆ Hafan.

Pupils at the school had a special reason for raising funds as Teaching Assistant, Karen Davies, and her family have benefitted a great deal from the charity’s services.

Karen’s 16-year-old son, Nathan, has severe learning difficulties and autistic features associated with global developmental delay. In 2010, he underwent emergency surgery to treat a severe bowel obstruction and remained in intensive care for a considerable length of time. A year later his condition deteriorated dramatically and he was referred to Tyˆ Hafan.

super shop!

Staff and volunteers at our Talbot Green charity shop embraced the hero theme for Children’s Hospice Week.

Bananaman, Wonder Woman and Super Mario were just some of the hero characters flying the flag for Tyˆ Hafan on Hero Friday.

Karen said: “Tyˆ Hafan provided invaluable support to us as a family during an incredibly difficult time. They provided compassion and a unique understanding of what we were going through. They were also particularly supportive towards Nathan’s sister Becky. We all spent Christmas 2011 at Tyˆ Hafan and were able to celebrate his 14th birthday there surrounded by family and friends.

“Tyˆ Hafan continues to provide short break care which enables us to have a break from his care and nursing needs.”

Steve Davies, Head teacher at Willowbrook Primary School, said: “Tyˆ Hafan is a children’s hospice run by heroes for heroes and the care, support and love that is given by all the staff is what makes it such a wonderfully special place.”

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15 years

of being there This summer we’ve been reflecting on 15 years of Tyˆ Hafan and taking the opportunity to thank our supporters whose generosity makes it possible for us to continue to care for life-limited children, young people and their families.

We recently held an Alice in Wonderlandthemed Supporters’ Tea Party in the grounds of the hospice to mark Tyˆ Hafan’s 15th birthday.

The sun was shining, the tea and cake were top-notch and everyone had a fantastic afternoon.

Our wonderful supporters have also been busy hosting their own tea parties as part of our 15th birthday tea party campaign.

If you would like to host your own tea party for Tyˆ Hafan, visit www.tyhafan.org/teaparty or call us on 029 2053 2255.

Photo © Paul Fears

Lynne Carter, Tyˆ Hafan’s Fundraising General Manager, said: “Tyˆ Hafan has developed so much in the last 15 years thanks to the commitment and generosity of our fantastic

supporters. Holding a tea party was a small way to show our gratitude for all they have done to support life-limited children and their families who rely on our services.”

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newsletter autumn/winter 2014

8 years at the helm Ray Hurcombe, Chief Executive Officer of Tyˆ Hafan is to step down in September following eight eventful and successful years at the helm.

Ray’s professionalism and leadership has contributed a vital chapter to the history of Tˆy Hafan. He has guided the evolution of Tˆy Hafan and laid the foundation for the charity’s further development.

Ray has made countless contributions to Tˆy Hafan’s provision of palliative care to children with life limiting conditions from across Wales, increasing the number

in care from 141 in 2006 to today’s 260, significantly developing the care services provided, extending care from the hospice into the family home and the provision of support to the extended family. He has championed new channels of sustainable funding to meet ever more complex needs and has established research disciplines and the academic, government and public sector partnerships that will enable the

charity to anticipate and respond to future needs.

He has attracted and inspired a first class team of professionals and shall be sorely missed.

Thank you Ray.

alice in wonderland family fun day More than 2,500 visitors came along to our Alice in Wonderland-themed Family Fun Day, which raised almost £10,000 for Tˆy Hafan!

The theme, chosen to represent the first event held at Tyˆ Hafan in 1999, included a whole host of attractions from craft stalls and crazy golf to giant chess and fairground rides.

Visitors also enjoyed being shown around the hospice by members of the Care Services team to see the incredible facilities on offer for life-limited children, young people and their families.

Emily Fradd, of Tyˆ Hafan, said: “We are so

pleased so many visitors enjoyed our Family Fun Day. The Alice in Wonderland theme was very popular and it was a wonderful way to mark our 15 year anniversary.

“I would like to say thank you to Dow Corning for sponsoring the event, our volunteers for all their hard work and to everyone who made the event possible.”

Photo © Paul Fears

The event, kindly supported by Dow Corning, featured performances from the Rock Choir, fantastic animal displays

as well as special visits from Alice in Wonderland characters.

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tyˆ hafan launches

precious moments appeal

Little Alice Hicks may only be a year old, but her story has already made a big impact.

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newsletter autumn/winter 2014

“What we found at Tyˆ Hafan was something truly special”

Little Alice from Cardiff is the face of our Precious Moments Appeal, which has been launched to help more children like her who will lead short lives.

As more families need our support, our annual costs are also rising and we need to raise £3.7m each year to provide our free services compared to just £1m when we started in 1999.

Alice and her parents, Ian and Hannah, are one of 262 families currently supported by the charity and wanted their story shared with people across Wales.

Like most new parents, Hannah and Ian couldn’t wait to go for their 20-week scan.

But all that excitement turned to anxiety when the midwife went to fetch the doctor.

They were told the most devastating news any parent can hear – their unborn daughter had a condition that meant it was very likely she would die in childhood.

“We left the hospital feeling like our world had fallen apart,” said Hannah.

“One minute we had been watching our child moving around on the monitor. The next, we were being told we would never see her grow up.”

Alice was born with hydranencephaly – a central nervous system disorder characterised by an enlarged head and neurological problems.

Her family was forced to prepare for the worst as she spent her first 15 days fighting for her life in the neo-natal unit at the University Hospital of Wales.

“As it became increasingly clear the doctors could do nothing more to help her, they suggested we took her for end of life care at Tyˆ Hafan,” said Ian. “Being told by our doctors that we would have to go to Tˆy Hafan felt like the end,

but it turned out to be a new beginning.”

After the fear and devastation of the previous weeks, the couple said they found some hope and happiness at Tˆy Hafan.

“What we found at Tˆy Hafan was something truly special – a place filled with laughter and smiles and love.

“We knew straight away that this was where we wanted to be,” said Hannah.

On the first day there, Alice’s grandfather had the chance to hold her for the first time.

“He hadn’t been able to hold her when she was in hospital, because she had been too poorly.

“As he cuddled his tiny granddaughter in his arms, he told us that his life felt complete. It was such a special moment for the whole family,” said Hannah.

Alice pulled through the early

weeks and is now enjoying spending time at home with her parents in Cardiff.

“There are so many ways Tˆy Hafan continues to be there for our family,” said Ian. “From the visits and phone calls from our Family Support Practitioner, Hayley, to the short breaks we have at the hospice.

“They help make sure every moment we have with Alice is spent creating memories that will last forever.

“We know that when the time comes, and Alice reaches the end of her life, they will support us through that too.”

Alice’s heart-rending story is being told on a YouTube video where her parents speak about their love for her and how much Tˆy Hafan helps.

To support the Precious Moments Appeal, please visit www.tyhafan.org/precious or call 029 2053 2255.

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rhys’ story – living with dmd

From spending time with his mates to playing video games or going bowling, outgoing Rhys loves nothing more than staying at Tˆy Hafan.

Rhys, 13, suffers from Duchenne Muscular Dystrophy (DMD), a neuromuscular condition. He and his family were referred to Tyˆ Hafan in 2005, when he was four years old.

DMD affects one in every 3,500 boys and symptoms generally appear in children before the age of five. By the age of 10 most boys will use a wheelchair and although life expectancy can vary, many boys do not live beyond their teens.

Of the children and young people who currently use our services, 37 suffer from DMD – making it the largest group of all the life-limiting conditions referred to us.

“I was about four years old when I started coming to Tyˆ Hafan,” Rhys says.

“DMD means to me that I get tired easily, and I cannot use my legs and body so well.

I have difficulties in doing things, such as different activities. I have to use my electric wheelchair to get around. I can do some things on my own with support and I can get around in my chair.

“I do understand things about DMD; my muscles have

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started to go weak and other parts of my body are weak too. I have problems moving.

I cannot walk any more but I use my chair to get me around. I need help in school and at home and when I go to Tyˆ Hafan, I have my carers to help me. There are things I cannot do. But there are other things I can do with help.”

Rhys helped with Tyˆ Hafan’s Summer Appeal, which was launched to help raise vital funds towards the £3.7m needed every year to provide Tyˆ Hafan’s services.

“I really enjoy going to Tyˆ Hafan,” says Rhys from Brynhyfryd, Swansea.

“It is a great place to visit and to stay. The carers and people are so friendly, helpful and great fun.

“I enjoy staying for a long weekend. I like going out with my carers and I enjoy the meals at Tyˆ Hafan – they are great. I like to play games in the den with friends I have made at Tyˆ Hafan. It’s fab.”

Sophie Williams, a palliative care nurse at Tyˆ Hafan, says she has supported a lot of children with DMD and feels privileged to do so.

She says: “It’s a condition that would devastate most people.

“But the boys that I’ve supported at Tyˆ Hafan have an infectious enthusiasm for life – despite knowing that they will have very short lives.

“It’s a very important part of my job to create a safe environment for the boys; an environment which focuses on what they can do, not what they can’t do.”

In addition to the physical care of the boys, Tyˆ Hafan also provides emotional and social support to the older boys, who are coming to terms with deterioration in their physical mobility and skills at a time of their lives when all their friends are beginning to make the most of their teenage years.

And Rhys can’t wait to visit again.

“I love everything about it,” he says. “It is a fantastic place.”

thank you Thank you to everyone that donated to our summer appeals – the response has been amazing. Thanks to your generosity we raised almost £15,000, helping us to support more life-limited children and their families throughout Wales.

newsletter Autumn/Winter 2014

“I love everything about it – it is a fantastic place”

t yˆ hafan legacy event Thank you to everyone that attended our 15th anniversary legacy event in June.

Since our inception in January 1999, more than 600 children and their families have benefitted from our services and gifts in Wills have provided care for one in five of the children we have supported.

Our family ambassador, Brad Watson, whose son sadly died at the hospice last year, spoke at the event about the difference Tyˆ Hafan has made.

He said: “Tyˆ Hafan was instrumental in providing our family with love, support and care during Archie’s short time here.

We do not know where we would have been without them, not just during Archie’s illness but even afterwards.”

Laura Barlow, Tyˆ Hafan’s Legacy and In Memory Fundraiser, said: “We appreciate all gifts, large and small, and every pound received will make the lives of those who need our services a little brighter.”

We know that including a gift to Tyˆ Hafan in your Will is a big decision, and you may have some questions.

We will be holding another legacy event in the early part of next year where we can provide more information about our services and gifts in Wills.

To register your interest in the event or to find out more about gifts in Wills, call 029 2053 2265 or email legacy@tyhafan.org

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t yˆ hafan launches first welsh

rainbow run An explosion of colour filled Coney Beach in Porthcawl for Tˆy Hafan’s first 5K Rainbow Run in April.

More than 1,000 participants were showered in pink, yellow, orange and blue powdered paint for the colourful Rainbow Run – the first event of its kind in Wales.

The Rainbow Run, sponsored by Admiral and Convey Law, is based on the Indian Holi festival of colour and is expected to raise more than £50,000 for Tyˆ Hafan.

Angelo Pucella, from Bridgend, who took part with his son Luca and his wife Beth said: “It has been such a fantastic day. Luca was so excited and he absolutely loved it. It was great to see so many people taking part to raise funds for Tyˆ Hafan.”

Luca is the only person in Wales to suffer from ROHHAD (Rapidonset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation) syndrome and was referred to Tyˆ Hafan in 2010.

Mair Jeffreys, Marketing and Events Officer at Tyˆ Hafan, said: “The Rainbow Run is about a celebration, having fun with friends and raising a smile for Tyˆ Hafan. It was wonderful to see so many Tyˆ Hafan families, staff and supporters taking part today.

“We are incredibly grateful to everyone who took part, not forgetting our amazing volunteers who have made the day possible.”

Our thanks to Paint Station sponsors: Admiral, Bridge FM, Coney Beach Amusements, DVS, J&J Motors, Jelf Insurance Brokers and South Wales Wood Recycling.

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our rainbow run is coming to west wales!

Places are filling fast for our west Wales Rainbow Run at Pendine Sands, Carmarthenshire, on 27 September. To register or for information on volunteering for the event, please visit www.rainbowrunwales.co.uk

Lloyd Davies, Managing Director of Newport Property Lawyers, Convey Law, has been appointed as our first Corporate Ambassador in recognition of the support that his company has provided to Tyˆ Hafan over the last four years.

As a Tyˆ Hafan Corporate Ambassador, Mr Davies will be tasked with encouraging other businesses and associations to fulfil their corporate social responsibility and working with them to support and promote the work that is undertaken at Tyˆ Hafan.

newsletter autumn/winter 2014

“It is a small ask for the rest of us to step up to a challenge once in a while”

colin charvis tackles welsh three peaks

for the “real heroes” at t yˆ hafan Rugby legend Colin Charvis was part of a Welsh Heroes Team which tackled the GE Aviation Wales Welsh 3 Peaks Challenge in aid of Tˆy Hafan.

ge aviation wales Colin joined former Wales internationals Rhys Williams and Mark Jones, along with Duane Goodfield, a former Cardiff Blues and Gwent Dragons player for the event, sponsored by GE Aviation Wales.

But according to Colin, the real heroes are the children and families supported by Tˆy Hafan.

During a visit to Tˆy Hafan, Colin and the team were shown around the hospice and the former Wales and British and Irish Lions player shared a special bond with two-year-old Willow from Ystrad Rhondda.

“Willow and her family face so many challenges every day,” said Colin. “It is a small ask for the rest of us to step up to a challenge once in a while to support these very special people. It

was so humbling to spend time at Tˆy Hafan. It is such a fantastic cause doing amazing things for families across Wales.”

Mair Jeffreys, Marketing and Events Officer at Tˆy Hafan, said: “We are incredibly grateful to all the participants, volunteers and GE Aviation Wales.”

Tyˆ Hafan would like to thank Braces Bakery, Brecon Carreg, Euro Commercials, Just Perfect Catering, L’Oréal, 9Bar and Paul Fears Photography for also supporting the event.

The challenge, which took place during Children’s Hospice Week, (13-20 June) saw 64 teams from across Wales taking part to raise vital funds for Tˆy Hafan and is expected to raise more than £70,000 for Tˆy Hafan, which needs to raise £3.7m each year to run its services.

GE Aviation Wales has supported the Welsh 3 Peaks event for the last 16 years and, in that time, has helped Tˆy Hafan raise almost £1.4 million.

Mike Patton, Managing Director of GE Aviation Wales, said: “The challenge attracts people from all across Wales and beyond. The atmosphere on the day is fantastic, and it is great to see so many people coming together to raise money for such an important and worthwhile cause.”

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cyclists’ epic trek to five capitals Emotions ran high when a team of fundraisers received a heroes welcome in Cardiff Bay after completing a 911-mile cycle challenge for Tyˆ Hafan.

The team, including a police officer, IT consultant and radiographer, cycled to the five capitals in the UK and Ireland in just five days, scaling an incredible 38,000 feet in tough weather conditions.

And when the team of 11 cyclists and 10 committed support staff were greeted at the finish line by a family supported

by Tˆy Hafan, some were overwhelmed with emotion.

Helen Morris, a member of the cyclists’ support team, said: “When they met Scott and Emily, who benefit from

Tˆy Hafan’s services, there were tears of elation and exhaustion.

“There were a lot of doubters who didn’t think we could do it – but we did, and we’re all absolutely thrilled with the achievement.”

The Capital Team have pledged to raise a phenomenal £50,000 for Tˆy Hafan.

Alison Stallard, Head of Business and Community Fundraising at Tˆy Hafan, said: “This challenge would have been tough for professional

cyclists; for a group of amateur cyclists to tackle almost 1,000 miles in five days is such a fantastic achievement. We can’t thank them enough for what they have done for Tyˆ Hafan and we hope they have all fully recovered from their ambitious challenge as I know some of the team went back to work almost straight away!”

To support the Capital Challenge 5x5 or to find out more information go to: justgiving.com/ capitalchallenge5x5 or go to their Facebook page Capital Challenge 5x5.

t yˆ hafan is first choice for the royal mint employees Warm-hearted staff from The Royal Mint in Llantrisant were so touched when they heard about the work of Tyˆ Hafan, that they chose to champion it as their staff ‘Charity of the Year’.

The Royal Mint staff plans for supporting the work of Tˆy Hafan are already well under way, with employees gearing up to ‘Give a Day’, supporting the charity as volunteers or participants in fundraising events through The Royal Mint’s corporate community day scheme, as well as individual sponsored efforts including

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the Tough Mudder obstacle race challenge and a novice triathlon.

Employees will also be taking part in Tˆy Hafan’s planned events, including the Cardiff 10k, Admiral Swansea Bay 10k, Men’s Health Survival of the Fittest, Cardiff Half Marathon 2014 and Snowdonia Marathon later this year.

Wendy Collie, Business and Community Fundraiser for Tˆy Hafan, said: “We’re delighted that The Royal Mint employees have taken the cause of Tˆy Hafan to their hearts with this partnership. It’s a great opportunity for them to gain an insight into the support, comfort and care we offer families at Tˆy Hafan.”

facts

911 miles cycled 5 capital cities conquered 38,000 ft climbed 700 peanut butter wraps consumed 1 broken arm 1 broken toenail £50,000 fundraising target

newsletter autumn/winter 2014

become a

Do you have some spare time to become a Tˆy Hafan volunteer? Volunteering is a great way to learn new skills, put old ones to use, meet lots of great people and gain valuable work experience.

But best of all is that volunteering for Tˆy Hafan really does make a huge difference to the lives of children and young people with life-limiting conditions and their families.

We have plenty of options to choose from: you can volunteer in our shops, at our events, in our warehouse, as part of our corporate or fundraising teams, or distribute and collect collection boxes.

For general volunteering opportunities call 029 2053 2199 or go to tyhafan.org/volunteer

thank you glenys!

Glenys Old has been supporting Tˆy Hafan since 2000. She often holds coffee mornings where passers-by are invited in for coffee and cake. She has raised over £26,000 so far and to show our appreciation we invited her to the hospice where we presented her with a certificate and flowers.

Neil Harvey has been a Collection Box volunteer for over two years, covering Cardiff, Penarth, Llandough, Caerphilly and Abergavenny.

What made you decide to become a Collection Box volunteer?

I’ve volunteered for Tyˆ Hafan for years, ever since a conversation with a mate about holding a cricket match for a local charity. The Area Manager for Cardiff at the time mentioned Collection Box volunteering. I had a meeting with Ken and never looked back!

What do you most enjoy about it?

Every day is different because you’re out and about; you never know who you’re going to meet or where you might end up.

Would you recommend it?

Definitely!

Photo © Paul Fears

superstar volunteer Some days my feet ache but I think of the kids over in the hospice and how I’m helping them, and that spurs me on.

It’s part of my life now. I love it.

Would you like to join Neil as a Collection Box volunteer? Maybe you have family members or For more information friends who contact Ken Davies on could help?

07917 847540, email Just a few ken.davies@tyhafan.org hours every or go to three to six tyhafan.org/volunteer months is all it takes to make a difference.

fundraisers needed in RCT A mum supported by Tˆy Hafan is appealing for volunteers to meet at least once a month to share ideas about fundraising with the aim of raising money towards a summer festival in 2015.

Kelly Matthews, whose daughter Willow was referred to Tˆy Hafan in 2012, is looking for enthusiastic individuals in RCT who are willing to spare a couple of hours to fundraise for Tˆy Hafan.

For more information please email wendy.collie@tyhafan.org

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our news and stories from t yˆ hafan 029 2053 2199

lucky winner scoops £12,000 lottery rollover jackpot

“I couldn’t quite believe it at first. I’ve never won anything before and it still hasn’t quite sunk in” Joan Merrett from Newport in Pembrokeshire was gobsmacked to receive a call from Tˆy Hafan’s Director of Fundraising and Marketing to tell her she had won the maximum £12,000 in Tˆy Hafan’s Crackerjackpot lottery rollover.

Joan is an avid supporter of Tyˆ Hafan and has played the Crackerjackpot lottery since it began 15 years ago.

When asked how she felt on receiving the big news she said: “I couldn’t quite believe it at first. I’ve never won anything before and it still hasn’t quite sunk in. I’ve always played the lottery to support Tyˆ Hafan but never expected this!”

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Lottery General Manager John Mladenovic added: “The rollover has only reached its maximum a handful of times and it’s fantastic to see such a loyal and long-standing supporter win the £12,000 prize.”

Mrs Merrett made the trip to Sully to receive her winning cheque and enjoyed a tour of the hospice. She said: “Tyˆ

www.tyhafan.org

in support of

Hafan is such a marvellous place. It’s been lovely to come and see first-hand the charity I’ve been supporting for all these years.”

Mrs Merrett kindly donated a portion of her winnings to Tyˆ Hafan and as a thank you she received artwork created for her at the hospice by Tyler Lane, who receives support from Tˆy Hafan.

Crackerjackpot has 81 guaranteed weekly prizes, including a £2,000 weekly jackpot, as well as the rollover which increases by £500 a week up to a maximum of £12,000.

You can join Crackerjackpot today by visiting the website at lottery.tyhafan.org or by calling 029 2053 2300.

newsletter autumn/winter 2014

over £50,000 raised!

summer

sunshine raffle

The Summer Sunshine Raffle draw took place on 17 July with the help of a family supported by Tyˆ Hafan. Hannah Brookes from Newport picked 12 lucky winners who scooped fantastic prizes including £3,000, £2,000 and £50 shopping vouchers.

Hannah’s five-year-old son Dylan was referred to Tyˆ Hafan in 2010. He was born prematurely at 30 weeks and suffered a collapsed lung at seven days old. A brain scan revealed Dylan had cysts on the brain and he was later diagnosed with cerebral palsy.

Hannah said: “He was about 11 months old when he was referred to Tyˆ Hafan and he’s been coming ever since. All Tyˆ Hafan’s support, especially the emotional support and short

break care, has made such a difference to our lives.

“Tyˆ Hafan helps the whole family and his siblings love visiting as well – especially now the new play area is up and running. It’s amazing to hear how much the raffle has raised for Tyˆ Hafan and we were thrilled to have helped with the raffle draw. It’s nice to give something back after all they’ve done for us.”

The top prize was won by Mrs

Price from Pontypool with the second prize going to Mrs Bevan from Burry Port. Both lucky winners were over the moon to find out they had won!

Tyˆ Hafan’s raffles, which run twice each year, raise more than £100,000 annually.

The Christmas raffle will be sent out in late September so keep your eyes peeled for your raffle pack and don’t forget, everyone who returns their tickets early will be entered

“It’s nice to give something back after all they’ve done for us”

into an extra fast draw to win one of five luxury Christmas hampers. If you don’t receive raffle tickets and would like to enter, please call 029 2053 2300.

We would like to thank everyone who took part in the Summer raffle and helped raise over £50,000!

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our news and stories from t yˆ hafan 029 2053 2199

www.tyhafan.org

t yˆ hafan opens boutique emporium store in abergavenny Shoppers looking for a unique boutique experience without the designer price tag are in for a treat at our new Emporium store in Abergavenny.

Following on from the success of our first boutique-style shop in Cowbridge, we officially opened our second Emporium store in the picturesque market town of Abergavenny on 23 May.

Liorah’s picture, taken at the hospice, is incorporated in the design of the shop to remind customers of the difference their purchases make to life-limited children and their families in Wales.

A vintage theme runs throughout the store at 55 Frogmore Street, which sells shabbychic furniture, antiques and a unique range of branded clothing.

Matt Williams, Retail General Manager at Tyˆ Hafan, said: “We have worked really

Some very special guests attended the official opening of the shop, including Liorah and her mum Tegan.

Seven-year-old Liorah McCarthy was referred to Tyˆ Hafan when she was three years old. She suffered a seizure three hours after being born and two major strokes shortly after. Although she is unable to walk or talk, she charms everyone she meets with her warm character and beautiful smile.

The family has benefitted a great deal from the breadth of services provided

by Tyˆ Hafan, including short break care at the hospice and music and play therapy delivered in their family home in Blaenavon.

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“We have worked really hard to develop the Emporium brand”

hard to develop the Emporium brand and we’re delighted with its success. We are really lucky to have such fantastic staff and volunteers starting at the new shop, including a deputy manager who has completed internships for ASOS and Victoria Beckham at London and New York fashion week.”

newsletter Autumn/Winter 2014

anna ryder richardson opens t yˆ hafan’s 27th shop in haverfordwest

“It is a comfort to know that there is always somebody available to help if needed”

TV presenter Anna Ryder Richardson joined a family supported by Tyˆ Hafan to officially open our latest shop in Bridge Street, Haverfordwest.

Since 1999, 26 families from the Pembrokeshire region have received care and support from Tyˆ Hafan, including brothers Michael and Samuel Gooding, who proudly cut the ribbon alongside Anna Ryder Richardson.

can put a huge strain on their parents who so welcome the support from Tyˆ Hafan. Michael and Samuel love going to Tyˆ Hafan where they receive expert one-to-one care and attention while mum and dad have a very well deserved rest.

Michael and Samuel from Kilgetty are both deficient in a specific growth hormone which has delayed their development and, at 15 and 18, they are both quite small for their age. They also have a condition known as hypohidrotic ectodermal dysplasia which means they do not have the ability to sweat.

David, their father, said: “Tyˆ Hafan is an invaluable part of our lives. Not only is it one of the fun highlights of the year for Samuel and Michael, it also provides essential respite for our family and helps us to focus on their younger siblings. The staff are incredibly friendly and supportive and it is a comfort to know that there is always somebody available to help if needed.”

Looking after these two lively boys who need constant care

Anna, who has supported Tyˆ Hafan for many years, said: “Tyˆ Hafan is a cause that is very close to my heart and I felt honoured to be supporting the official opening. I have donated some of my clothes and would urge others to do the same as it’s a great way to declutter your home as well as making a big difference to the lives of life-limited children and their families from across Wales.”

Anna kindly gave the Gooding family a free day pass to her zoo in Tenby and has extended free admission to all Tyˆ Hafan families.

Thanks, Anna!

stock needed Last year, the goods Tˆy Hafan supporters donated to our shops made a valuable contribution towards the £3.7 million needed every year to run the charity.

We really do love most of the things donated to us, but especially: • men’s, women’s and children’s clothes • accessories such as shoes, belts, bags and jewellery • homeware – anything from crockery to curios, pictures to plates • small furniture – upholstered items need a fire safety label Visit www.tyhafan.org/find-yourlocal-shop to find your nearest T yˆ Hafan shop or call 029 2053 2261 for more information.

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our news and stories from t yˆ hafan 029 2053 2199

katie’s story If you were to pass me in the street you would think that I am a healthy teenage girl, but behind all of this, lies a story I never really open up about unless you know me.

Before I was born, doctors noticed that there was something wrong with my heart, but it wasn’t until I was born that doctors diagnosed a heart defect which is called Hypertrophic Cardiomyopathy.

I also have Noonan-Like Syndrome, which means extremely slow or restricted growth.

Even though my Hypertrophic Cardiomyopathy is not severe currently, it was when I was a baby and it has caused hundreds of hospital stays in the last 17 years.

It is incredibly difficult living with a heart defect, especially when you become a teenager and are restricted from things a normal teenager would do. But throughout it all, I’m okay, and I have met some amazing people on the walk through my journey.

Tˆy Hafan is a wonderful, loving place and every member of staff is so truly welcoming and comforting. As soon as I walk through the doors, this feeling of peace comes over me. Since going to Tˆy Hafan I have created the most beautiful bond with Casey Hard and his family. They have truly inspired me on how they can stay so strong when so much goes wrong. Each and every one of

“Life is not measured by the number of breaths we take, but by the moments that take our breath away” 22

them are truly amazing including Casey’s Nan, Tracy. Her messages to me have been nothing but a tower of strength for me.

If there’s one person I need to thank in this world, it’s my Mum. She has been my hero and I wouldn’t be here today if it wasn’t for her. After the trials, the challenges that you face in life you may question the existence in God. It took me years to finally believe, but I do truly think that he’s there.

Looking into the future, I hope to become a soap actress (this has always been my childhood dream) and also to become a role model for people that are experiencing what I have gone through as a child and tell them that “it’s okay” and to be strong.

There’s always going to be big challenges that I have to face, but I will face them with strength, hope and faith. I hope to bring comfort to each and every family supported by Tyˆ Hafan through this quote: “Life is not measured by the number of breaths we take, but by the moments that take our breath away.”

This is one of my favourite quotes and I always get strength from it.

www.tyhafan.org

✂

please help us be there for another 15 years...

1. Your gift I would like to make to families single donation of: in Wales

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or I would like to make a regular donation of: £5

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I confirm I have paid or will pay an amount of Income Tax and/or Capital Gains Tax for each tax year (6 April to 5 April) that is at least equal to the amount of tax that all the charities or Community Amateur Sports Clubs (CASCs) that I donate to will reclaim on my gifts for that tax year. I understand that other taxes such as VAT and Council Tax do not qualify. I understand that Tˆy Hafan will reclaim 25p on every £1 that I give. This declaration also relates to all donations I have made to Tˆy Hafan in the past four years and all donations I make hereafter until I notify you otherwise.

Please return this form to Tyˆ Hafan, Hayes Road, Sully, CF64 5XX You can also donate at www.tyhafan.org or by calling 029 2053 2255 The Direct Debit Guarantee: The Guarantee is offered by all banks and building societies that accept instruction to pay Direct Debits. If there are any changes to the amount, date or frequency of your Direct Debit Tyˆ Hafan will notify you (normally 10 working days) in advance of your account being debited or as otherwise agreed. If you request Tyˆ Hafan to collect a payment, confirmation of the amount and date will be given to you at the time of the request. If an error is made in the payment of your Direct Debit, by Tyˆ Hafan or your bank or building society, you are entitled to a full and immediate refund of the amount paid from your bank or building society. If you receive a refund you are not entitled to, you must pay it back when Tyˆ Hafan asks you to. You can cancel a Direct Debit at any time by simply contacting your bank or building society. Written confirmation may be required. Please also notify us.

celebrate our

15 birthday th

with a tea party

From organising tea and cake with friends to holding a themed tea party with your colleagues, what better way to raise funds for t yˆ hafan than enjoying a cuppa?

Help raise funds... to support life-limited children, young people and their families across Wales.

www.tyhafan.org/teaparty 15 years of being there