Tŷ Hafan Newsletter Spring/Summer 2014

cwtch

newsletter spring/summer 2014

our news and stories from tyˆ hafan

15 years of being there inside 15 years of being there

celebrate our 15th birthday with a tea party p.6

leigh halfpenny opens hydrotherapy pool p.14

brighten a life at our neon night p.20

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our news and stories from t yˆ hafan 029 2053 2199

welcome Welcome to our Spring/Summer edition of Cwtch. We thought what better time to refresh our newsletter than our 15 year anniversary? We really hope you enjoy the new look and feel of our magazine as much as we do.

www.tyhafan.org

15 year

We have much to celebrate as we reflect on the hundreds of families we’ve supported and cared for since our inception in 1999. In this edition, you will find stories from families and staff who have been with us since the beginning, a round-up of our latest events, information on our tea party appeal and much more.

Tˆy Hafan has changed a great deal over the last 15 years.

We are extremely proud to be leading the way in children’s palliative care and are continually evolving to meet the needs of the families we support.

Many people don’t realise that much of our work is now delivered in the community. In fact, 70% of our families receive support at home, in school or at hospital.

Our 14-strong outreach team delivers a range of services including play and music therapy in the family home. On pages eight and nine you will read how play therapy has helped one little girl develop beyond all expectations.

Although by expanding our services we are able to reach more children and their families, it also means our costs are rising.

We now have to raise around £3.7m every year to run our services compared to just £1m in 1999.

The great Welsh public continues to fund an incredible 90% of our care services. Thank you for allowing Tˆy Hafan to continue being there for life-limited children, young people and their families from across Wales.

As we look to the future, we will continue to journey with our families through difficult times whilst giving them precious memories they can cherish forever.

Ray Hurcombe Chief Executive

contents

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15 years of being there .................................................. 02 our timeline ..................................................................... 04 tyˆ hafan tea party ............................................................ 06 willow’s story ................................................................... 08 every child leaves their mark .......................................... 10 thank you ......................................................................... 11 rhydian’s story ...................................................................12 leigh halfpenny opens hydrotherapy pool .................... 14 charity abseil for tyˆ hafan ................................................ 16 devils take to the ice with tyˆ hafan ................................. 17 christmas panto ............................................................... 17 work starts on new playground ..................................... 17 bridget’s challenge .......................................................... 18 rainbow run ..................................................................... 19 midnight sleep walk ....................................................... 20 welsh three peaks ........................................................... 21 children’s hospice week ................................................. 22 helps us be there for another 15 years... ..................... 23

We now have to raise £3.7m every year to run our services compared to just £1m in 1999

70% of families receive support in the community

newsletter spring/summer 2014

rs of being there our journey It was the determination of one woman from Beddau, combined with the generosity of the people of Wales, that led to the creation of Tˆy Hafan - Wales’ first children’s hospice.

Research into the need for a children’s hospice established that there were as many as 300 children in Wales that could benefit from the service.

Recognising the lack of provision for life-limited children and their families inspired Suzanne Goodall’s 11 year fundraising campaign to build our stunning hospice overlooking the Bristol Channel in Sully, Vale of Glamorgan.

The South Wales Echo played a big part in the campaign, launching the Tˆy Hafan Appeal in 1994. In the same year, the Princess of Wales became a Patron of Tˆy Hafan and organised a fundraising concert with Luciano Pavarotti a year later.

More than £2.3m was raised towards building and equipping the hospice, which finally opened on 25 January 1999. We welcomed the first three children to Tˆy Hafan and haven’t looked back since.

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1990

Tyˆ Hafan registers as a charity.

1993

Site obtained in Sully for the building of the hospice.

1994

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ou

South Wales Echo launches Tyˆ Hafan Appeal.

1994

Princess of Wales becomes patron of Tyˆŷ Hafan.

1995

Pavarotti holds concert in Cardiff to raise money for Tyˆŷ Hafan.

1996

Building of the hospice commences.

2001

HRH the Prince of Wales becomes patron of Tyˆŷ Hafan and makes his first visit to the hospice.

1997

The hospice building is handed over to Tyˆŷ Hafan for fitting and equipping.

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2003

Tyˆ Hafan increases to a seven day service.

2004

Tyˆŷ Hafan founder Suzanne Goodall is awarded an MBE in the Queen’s New Year’s Honours.

newsletter spring/summer 2014

ur timeline 2014

Tyˆŷ Hafan celebrates its 15 year anniversary.

2013

Tyˆŷ Hafan receives awards from the Royal College of Nursing.

2012

Tyˆŷ Hafan creates Education and Research department.

2011

BBC Wales screens four-part series, Beautiful Lives.

2009

Tyˆŷ Hafan rebrands and celebrates its 10th birthday.

2008

Tyˆŷ Hafan launches the first ever scout group for a hospice in Wales.

2005

Cath Thompson, Head of Care Services at Tyˆŷ Hafan, is one of ten staff members to have worked at the charity since the beginning. She shares her experiences and describes why it is such a “privilege” to work at Tyˆŷ Hafan:

“It is hard to imagine that a chance conversation in 1997 with TyˆŷHafan’s first Director of Care would have resulted in me spending nearly half my nursing career at Tyˆŷ Hafan. I knew that the skills and experience I had developed would one day lead me to my dream job, and I found that at Tyˆ Hafan.

“We began delivering our service on Monday 25 January 1999 and, as a new and evolving service, our aim was to work with the children and families to develop a high-quality palliative care service that really did meet needs.

“At first, the service we offered was based at the hospice, but as we grew to know what our children and families needed we developed a complementary therapy service and an outreach play service whilst expanding our family support provision and music therapy sessions.

“The hospice itself has undergone a number of changes to accommodate the children and families, including the upgrade of the hydrotherapy pool and the outdoor play area, currently under construction.

“Whilst the way in which we provide such services has changed and developed over the 15 years, our aim remains the same because the children and families are at the heart of what we do and why we do it.

“I can honestly say that it has been an honour and a privilege to be part of something so unique and worthwhile and I can only thank the children and families for sharing their lives with me.”

Jeff Griffiths is an active member of our dads’ group and volunteers for Tyˆ Hafan in his spare time.

His step-daughter, Melanie, was amongst the first to visit the hospice when it opened in 1999.

Melanie suffered from Sanfilippo syndrome, a condition causing progressive cell damage, and sadly died shortly after her 16th birthday.

Jeff said: “The staff were brilliant with Melanie and I feel like part of the team as I’ve known everyone for so long.”

Jacob Ferriday was one of the first three children to receive short break care at the hospice on 25 January 1999.

His mum, Sally, spoke about the support of Tyˆ Hafan at a recent conference. She said: “I simply couldn’t have coped without Tyˆ Hafan. They have been our lifeline and I can’t thank them enough.”

Here is Jacob, now 17, having a great time with Cardiff Devils Captain Mac Faulkner...

Expansion of family support team.

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celebrate our

www.tyhafan.org

15 birthd th

with a tea party

As a way to mark our 15 year anniversary, we are asking everyone from individuals and community groups to businesses and schools to raise funds for Tyˆ Hafan by hosting their own tea party.

From organising tea and cake with friends to holding a ‘mad hatter’ themed tea party for your colleagues, what better way to raise funds than enjoying a cuppa?

Can you believe we get through a staggering 165 million cups of tea every single day? So, as a nation of tea lovers, we want as many people as possible to put the kettle on and help us reach our £100,000 fundraising target. By holding a tea party, you will help support our vital services in the community.

Lynne Carter, Fundraising General Manager at Tyˆ Hafan, said: “We are really excited to be launching our Tea Party Appeal. Holding your own tea party is a great way to have fun whilst raising vital funds to help life-limited children and their families in Wales.”

For more information on hosting your own Tyˆ Hafan Tea Party, you can visit our website, where you’ll find loads of tips on hosting and promoting a charity tea party of your own. www.tyhafan.org/teaparty

Shopping list 250 could pay for 3 £outr each support

a day of a week of

1,500 could pay for 3 £outr each music therapy 60 could pay for 3 £fam ily support

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an hour of

£ 75 could pay for an exhausted mum to receive an hour of complementary therapy in her home

newsletter spring/summer 2014

Use our poster on the back page to promote your own tea party

day

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“We love going corner to Tˆy Hafan.

Everyone is so happy and positive there. Casey is always made to feel welcome, as are Mummy, Daddy and sister Reagan.

Here’s to the next 15 years and beyond xxxx.”

Casey’s Cause

“Thank you Tˆy Hafan for the support and care you gave to Connor. You gave him and his family hope for the future.

We celebrated his 21st birthday last Tuesday!

Thank you for the part you played in the miracle of Connor’s extended life.

God bless you all.”

Steve Knapton

“15 years has gone in the blink of an eye!

Thank you to everyone at Tˆy Hafan for the wonderful support they offered not only to Lowri Mai, but to the entire family.

Particular thanks goes to Hayley Mason who is an absolute Angel xx WELL DONE EVERYONE, you have our support forever.”

Angela Jones

“A big thank you for your support with my late daughter. It made a big difference in our lives x.”

Victoria Walsh

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willow’s story Kelly and Damien Matthews were devastated when they were told their daughter may not survive her first few days due to a life-threatening condition called Central Hypoventilation.

The condition means Willow is unable to breathe by herself, and when she was four weeks old, Kelly and Damien were given the option to switch off her ventilator.

They refused to give up on their daughter and now, aged two, Willow has beaten all the odds and continues to improve every day. “She continues to surprise us and is such a little fighter,” said Kelly.

Willow is connected to a ventilator 24 hours a day and her condition can worsen during the night.

“It’s quite overwhelming knowing we are keeping our daughter alive every day. It’s a big responsibility and can be hard at times,” said Kelly.

Willow spent her first nine months in hospital and at four months old, she was referred to Tˆy Hafan, the family hospice for young lives.

“I was apprehensive at first.

I didn’t want her going to a hospice,” said Damien. “I thought it would be clinical and sad, but I couldn’t have been more wrong. It’s a wonderful place; so happy, welcoming and friendly.”

Willow receives short break care at Tˆy Hafan, which allows Kelly and Damien to have a much-needed rest. “She loves it when she stays,” said Damien. “She has her own patio with a sea view. Her room is decorated all pink and girly and she loves the star lamps at night.”

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“Tˆy Hafan has helped take away our stresses,” said Kelly.

“Having that break helps us cope so we can carry on with the next few months. We don’t realise how stressed we’ve been until we’ve had that rest.”

Tˆy Hafan’s support has enabled Willow to achieve more than she was ever expected to. She now plays, verbalises and is even starting to stand on her own.

“We know that without Tˆy Hafan, she wouldn’t be achieving her full potential,” said Kelly. “Every time she stays at Tˆy Hafan, we can see her developing.”

“When we were told she held a rattle for the first time at Tˆy Hafan, we couldn’t believe it! They spend hours giving different therapies in the music, sensory and play rooms – it makes such a difference to her life.”

A Tˆy Hafan play specialist also visits Willow at the family’s home in Ystrad. The sessions not only develop Willow’s communication skills, but also show Kelly and Damien how to play with their daughter to continue her development.

A family support worker is also always on standby for the family 24 hours a day, offering advice and much-needed emotional support.

Despite facing difficult times, Kelly and Damien wouldn’t have Willow any other way and feel very lucky to have such a beautiful daughter.

“We are incredibly proud of Willow. She brings so much joy to our lives and it’s lovely to know everyone at Tˆy Hafan adores her just as much as we do,” said Kelly.

“And although we don’t want to think about it, if in the next month, or year, she does pass away, Tˆy Hafan is where we’ll want to be.”

The couple can’t thank Tˆy Hafan enough and Kelly is taking part in the charity’s Midnight Sleep Walk to show her appreciation: “They are like stars in the sky,” said Kelly.

“They are all really special to us and we want to do anything we can to show our support.”

“We know that without Tyˆ Hafan, she wouldn’t be achieving her full potential”

newsletter spring/summer 2014

snippet stories

“Having that break helps us cope so we can carry on with the next few months”

blooming lovely surprise!

The commitment of two of our most dedicated volunteers was recognised with a bouquet of the week from the South Wales Echo. Lyn Hull and Rhona Jones were both thrilled to receive a beautiful bouquet of flowers. Lyn volunteers at our shops and is a Tyˆ Hafan Ambassador and Rhona is a volunteer who helps out with our lottery and raffle draws.

in support of

Crackerjackpot is a fantastic way to support Tyˆ Hafan and also be in with the chance of winning great prizes every week. The weekly top prize is a huge £2,000 as well as 80 other prizes of 60 x £5 and 20 x £10. Plus there is our rollover prize which goes up by £500 a week and can reach a whopping £12,000!

You can join today by visiting www.lottery.tyhafan.org or by calling us on 029 2053 2300.

festive fun raffle This year’s Tyˆ Hafan Christmas raffle was an overwhelming success, raising a huge £75,000!

Grandmother Janet Griffiths, of Caerphilly, was delighted to receive a telephone call telling her she had won the raffle’s top prize of £3,000. “I was really shocked to find out I’d won but I’m so pleased,” she said. We would like to say a big thank you to everyone who took part in the raffle.

Keep your eyes peeled for the Summer Raffle tickets which should land on your doorstep in May.

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date for your diary

every child leaves their mark

Since 1999, almost 600 children have left their mark on Tˆy Hafan. One of those children was Archie Watson.

Archie was diagnosed with Tay-Sachs disease when he was just six months old and was referred to T yˆ Hafan not long after. We invited Archie to add his handprint to our wall on his first visit.

We said goodbye to Archie alongside his family on Monday 25 March. Brad, Lauren and Jack spent the day with him in his room, cuddling him and telling him stories.

Unfortunately, Archie was a very poorly little boy, and by February 2013 Archie’s mum and dad knew they didn’t have much time left with him. They came to T yˆ Hafan to find his room decorated with all the things he loved the most – the Cookie Monster and Kermit were everywhere.

Archie has left his mark on all of us at T yˆ Hafan in so many ways. To mark our 15th birthday, we’re asking our supporters to consider leaving their mark on T yˆ Hafan too – with a gift in their Will.

Archie and his family stayed with us for just under a month and we did everything we could to make sure those final weeks were packed full of happy moments.

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Helping us in this way means T yˆ Hafan can continue to care for Welsh families with a life-limited child long into the future.

If you would like more information, call us on 029 2053 2265 or email legacy@tyhafan.org. You can also visit www.tyhafan.org/gift-in-a-will

Write a Will campaign 12-23 May 2014 Solicitors across Wales will be offering T yˆ Hafan supporters the chance to write a Will for just £50.

Did you know?

One in five children referred to T yˆ Hafan is cared for through a gift in a Will?

What is Tay-Sachs disease?

Tay-Sachs disease is a very rare and usually fatal genetic disorder that causes progressive damage to the nervous

system

newsletter spring/summer 2014

thank you We’d like to say a huge thank you for the fantastic response we had to our Christmas appeal.

Thanks to your generosity, we raised a fabulous £23,000 which will help support life-limited children, like Casey Hard, and their families throughout Wales.

Casey was born with extensive brain damage and when he was just six weeks old, he was diagnosed with cerebral palsy and epilepsy. Casey has painful seizures, and the family were told he may only live for a few years.

When the family thought things couldn’t get much worse, dad Anthony was diagnosed with a brain tumour and he was told that they wouldn’t be able to remove it.

You may have read about Casey and his family in our Christmas appeal, and you might remember Casey’s sister, Reagan, and her Christmas wish to see her little brother smile.

Just days before Christmas the family were finally given some good news to celebrate and smile about – Anthony was told he was given the all clear of his brain tumour.

Anthony told us that he is looking forward to spending time with his wife Nahella, Reagan and Casey at home in Newport.

He said: “I’ve been given the all clear, it’s such a weight off our shoulders. This time last year they told me my tumour had come back and the year before last I was diagnosed, so coming up to Christmas has been bad news after bad news. We can now look to the future and enjoy spending time together as a family.”

So Reagan’s wish came true this Christmas, but she not only saw her brother smile, but her whole family too.

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Photo © Christoph Soeder

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rhydian’s story Little Rhydian and his family were referred to Tˆy Hafan in 2009. Seven-year-old Rhydian is an outgoing, happy and charming little boy. He is always smiling and loves nothing more than to sing and dance to his favourite songs.

But what makes Rhydian different to other boys his age is that he is battling a brain tumour. He was six months old when he was diagnosed and despite several operations, the tumour grew back and significantly affected his development.

Rhydian is not able to bear his weight, except with a standing frame, has limited movement on his right side, has partial sight in his left eye and is registered blind. His family from Lampeter were 12

devastated when doctors said he couldn’t have any more surgery and that he would need 30 sessions of extensive radiotherapy. The family didn’t know where to turn until they were told about Tˆy Hafan.

“We were in desperate need of help,” said mum Carys.

“Our lives had been thrown upside down and we thought we’d have to face our journey alone. It was such a relief to know that we had Tˆy Hafan’s support. For the first time in a long time, we were able

to share our concerns with a team of people who really cared about our needs, and I instantly felt the weight lift off my shoulders,” said Carys.

Tˆy Hafan provided the family with a safe, comfortable environment whilst they made endless trips to hospital for Rhydian’s radiotherapy treatment.

“We went to the hospital every morning, five days a week.

Rhydian and I stayed at the hospice from January to April and Les and the kids would

visit every weekend. Without Tˆy Hafan, we would have been forced to drive two-anda-half hours each day for his treatment. Either that, or stay at the hospital, and we really didn’t want Rhydian to experience that.”

Rhydian’s siblings Catrin and Owain both belong to Tˆy Hafan’s super sibs group in west Wales. They have made lots of new friends and enjoy spending time with other siblings facing similar situations. Catrin suffers from

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snippet stories

mums on tour Tˆy Hafan mums had a fantastic time when they went Christmas shopping in Bath. Here is a picture of them enjoying their welldeserved treat!

dads’ army!

Rhyd’s favourite joke What do cows eat for breakfast?

Mooseli!

Multiple Sclerosis and is also in and out of hospital.

Tˆy Hafan’s support is vital as it allows Rhydian to be cared for at the hospice whilst his older sister is treated at hospital.

“Without Tˆy Hafan, it’s likely Les would have to give up work. We try to keep family life as normal as possible and Tˆy Hafan allows us to do that,” said Carys. The family also benefit greatly from Tˆy Hafan’s outreach

Our dads’ group continues to go from strength to strength. From five-a-side football to auditioning for X Factor – their bond is as strong as ever.

services. A Family Support worker is on hand 24 hours a day and visits them at home regularly, offering financial advice, helping them access community services as well as just providing a listening ear for when the going gets tough.

to be visually stimulated.”

She added: “This list goes on and the support never stops. Tˆy Hafan has meant everything to us. We really hope more people show their support so more families like ours don’t have to face their journeys alone.”

“Tyˆ Hafan also visits us at home to show us how to play with Rhydian. He can’t see colours but he can see shapes, which is why it’s so important for him

We need your support to continue providing support to families like Rhydian’s.

To make a donation, please visit www.tyhafan.org

super sibs!

Our annual siblings Christmas party, kindly held by our longstanding supporters Tiger Tiger Cardiff, was a huge success and our ‘Great British Bake Off’ themed-events continue to be a winner for our siblings!

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leigh halfpenny opens hydrotherapy pool It was smiles all round when our Ambassador Leigh Halfpenny officially opened our new hydrotherapy pool on 26 March.

The rugby star was delighted to cut the ribbon in front of thrilled families and staff members who couldn’t wait to use the facility.

The state-of-the-art hydrotherapy pool provides a fantastic environment for therapy, communication, socialisation and play. It is fully equipped with disco and sensory lights as well as speakers for music, and also includes hoists to help children enter and exit the pool.

Jayne Saunders, Director of Care at Tyˆ Hafan, said: “For many families, it will be the first time they will be able to enjoy being in a pool together as the facility provides a safe and comfortable environment for children and young people with complex medical needs.”

Leigh said: “It was an honour to officially open the hydrotherapy pool and it was wonderful to see the children enjoying the new facility. As a professional sportsman, I know how effective hydrotherapy treatment is in providing both physiological and psychological benefits. The pool is a superb addition to TyˆŷHafan and I am proud to be supporting a charity which does such a fantastic job in caring for the most inspirational children and their families.”

TyˆŷHafan is incredibly grateful to the many groups, businesses and supporters that contributed towards the £400,000 cost of the hydrotherapy pool.

The state-of-theart hydrotherapy pool provides a fantastic environment for therapy, communication, socialisation and play

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newsletter spring/summer 2014

snippet stories

emporium We are delighted with the success of our new Emporium store in Cowbridge.

Emporium is our new line of boutique-style shops and plans are already afoot to open more in the future. If you haven’t visited Emporium yet, why not give it a try? And don’t forget to donate any of your unwanted goods so we can keep supporting life-limited children and their families in Wales.

porthcawl Crowds started to gather early at 54 John Street in Porthcawl in anticipation for the official opening of our 25th shop.

Elvis impersonator Jimmy Elvis entertained the public with some hip-shaking songs, but the star of the show was seven-year old Luca Pucella who was joined by his parents Beth and Angelo to cut the ribbon.

new website You may have noticed our brand new website which was launched in April. The new site provides more information than ever before including a new events calendar, videos, family stories and much more.

Take a look today at www.tyhafan.org

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£4,000 was raised to mark the hotel’s partnership with the organisation

charity abseil for tyˆ hafan 17 company bosses from across Cardiff abseiled down the front of The Mercure Holland House Hotel and Spa Cardiff – the city’s seventh tallest building – to raise funds for Tyˆ Hafan.

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The 16-storey plunge, which raised nearly £4,000 for Tyˆ Hafan, was organised to mark the hotel’s partnership with the organisation.

abseil,” said Marisa Morteo, the hotel’s general manager, who was among those volunteering to take the vertical route to the car park.

“We wanted to do something out of the ordinary to encourage as many donations as possible, so we came up with the idea of the

“After all, it’s not very often that staff get the chance to push their boss off the roof is it?”

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devils take to the ice with tyˆ hafan The Cardiff Devils took to the ice alongside some very excited children and their families on 26 February.

Nine families, supported by Tyˆ Hafan, received VIP treatment from the 2013-14 Devils team and enjoyed an hour-long skate session at Cardiff Arena.

The skate with players was an experience captain Mac Faulkner felt would be a welcome addition to coincide with the on-going partnership between the Cardiff Devils and Tyˆ Hafan.

“We have done a lot with Tyˆ Hafan this year and it’s unreal what they do for the kids and families in their care. The idea to offer a skate with the team was very well received and all of the guys were more than happy to give up their personal time to offer their support. It was a great success and the most important thing from the day was that all of the kids had a blast,” said Mac.

christmas panto

work starts on new playground

Yet again the Tˆy Hafan pantomime was a great success with lots of companies coming along to take part.

An official turf cutting ceremony took place on 14 March to mark the start of building work on our new £230,000 playground.

Companies House enjoyed performing so much that they took part in three productions whilst St David’s shopping centre took part twice – gluttons for punishment!

All our families loved it and were singing and cheering the whole time. The icing on the cake was when Father Christmas made an entrance at the end to deliver presents to all the children.

The design for the new site is based around a desert island theme due to our location next to the Bristol Channel. The entire space is accessible for wheelchair users and every piece of equipment has been selected with integration in mind.

A bespoke lighthouse, wheelchair seesaw, trampoline and race track are just some of the features planned for the new facility.

The playground is due to be completed by the summer.

Jacob Ferriday, 17, and his mum Sally from Barry were the special guests who cut the turf on the day.

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bridget’s challenge If you need any motivation to take part in one our events or any other fundraising challenge for Tyˆ Hafan, then look no further than Bridget James – an inspirational mum who completed 13 half marathons in 13 days!

Bridget’s inspiration to push herself to the limit, was her four-year-old daughter Elain.

Little Elain was referred to Tˆy Hafan in January 2011 after being diagnosed with a complicated heart condition and a genetic disorder.

Elain underwent heart surgery at just three months old and spent five months in hospital.

Elain now has a good quality of life but sadly, it is only a matter of time before her condition deteriorates.

Tˆy Hafan provides vital support for the whole family, offering short break care at the hospice and vital emotional and practical support for Bridget, 29, and Gareth, 33 at their home in Aberystwyth.

Bridget said: “Tˆy Hafan is a wonderful charity and raising funds is a way we can show our appreciation for all they’ve done for our family.”

Bridget came up with the idea of running 13 half marathons in 13 days last year. She has always been a keen runner, having completed three marathons and ten half marathons in the past, but she

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wanted a new challenge and to achieve something out of her comfort zone.

Bridget said: “I was happy and surprised that I ran nearly the whole thing. Never in a million years did I expect to create so much hype and that we would get so much support. Elain inspired me to keep going and I was so thrilled to complete my challenge.”

She updated people about her progress over the 13 days on her popular blog which she started in 2011.

Bridget was also joined by other people along the route, including Paralympic gold medallist Mark Colbourne and TV presenter and endurance marathon runner Lowri Morgan.

Elain’s Appeal, set up by Bridget and Gareth, has raised almost £80,000 for a number of charities, including Tˆy Hafan.

To find out more about Bridget’s story, visit her blog at www.apelelain.com

Bridget and Gareth have raised almost £80,000 for a number of charities, including Tyˆ Hafan

newsletter spring/summer 2014

entrants must wear white at the start and be plastered in colour every kilometre

it’s about celebration, and having crazy fun with friends

rainbow run A sea of green and pink, mixed with splatters of purple, blue and yellow, will be hitting south Wales for our first ever Rainbow Run. Participants will be doused from head to toe in rainbow-coloured powder in the 5K fun run being held at Coney Beach, Porthcawl on Sunday 27 April.

The event, which is the first of its kind in Wales, is based on the Indian Holi festival of colour and is expected to raise more than £40,000 for Tˆy Hafan.

There are no winners, no official times, and only two rules: entrants must wear white at the start and be plastered in colour every kilometre.

Mair Jeffreys, event organiser at Tˆy Hafan, said: “The Rainbow Run is not a race, nor is it about speed or fitness; it’s about celebration, having crazy fun with friends and raising a smile for Tˆy Hafan.”

Entry is £10 per person or £30 for a group or family of five (family groups must include at least two adults and children must be aged eight or over).

Each participant is also asked to raise a minimum sponsorship of £50.

West Wales Rainbow Run coming soon...

To register or for more information on the Rainbow Run, please visit www.tyhafan.org/rainbow-run or call 029 2053 2276 19

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our news and stories from t yˆ hafan 029 2053 2199

16 May 2014 Brighten a life at Tˆy Hafan’s neon night

midnight sleep walk We are asking ladies to ‘go neon’ for our hugely popular annual Midnight Sleep Walk in Cardiff.

The six-mile midnight walk will once again start from the city’s iconic Millennium Stadium, and the event will include exciting entertainment beforehand and free tea and cupcakes for walkers at the end.

This year’s event will not only help brighten the faces of loving Tˆy Hafan families - but light up the entire night sky in tribute to them.

So come on ladies, grab your pyjamas together with neon accessories for our fantastic Midnight Sleep Walk.

Register today at www.midnightsleepwalk.co.uk 20

Imagine never having a good night’s sleep?

This is the reality for many T yˆ Hafan parents who care for their life-limited children 24 hours a day.

From dealing with a seizure in the middle of the night to administering medication on the hour, every hour – the demands of caring for a life-limited child can be extremely challenging.

Which is why we want you to give up one night’s sleep in tribute to these very special mums and dads.

www.tyhafan.org

newsletter spring/summer 2014

welsh three peaks Wales rugby legend Colin Charvis will be captaining a celebrity Welsh Heroes Team for the GE Aviation Wales Welsh 3 Peaks challenge in aid of Tyˆ Hafan.

Now in its 16th year, the event will see participants scaling Snowdon, the highest peak in Wales, before tackling the mighty Cadair Idris and Pen-y-Fan, all within 15 hours.

Former Wales captain Colin Charvis will join hundreds of participants for the 20.35 mile challenge taking place on Saturday 14 June.

dads’ army A group of dads of some of the children and young people supported by Tˆy Hafan will be entering teams once again this year.

Matthew Smith’s four-year-old son, Lewis, suffers from Tuberous Sclerosis and was referred to Tˆy Hafan more than three years ago.

After completing last year’s event he said: “It was a huge challenge but I’m so pleased we did it. It has been a great way to show our appreciation for the team at Tˆy Hafan and we’ll be continuing with our fundraising efforts for this amazing charity.”

He said: “I’m really excited to be taking part in the GE Aviation Welsh 3 Peaks challenge for Tˆy Hafan. It will be a tough day, but we should put things into perspective and think of the daily challenges these children and their families live through.”

To date, more than 5,000 people have travelled from all over the world to undertake the challenge and a total of £1.32m has been raised for Tˆy Hafan, the family hospice for young lives.

GE Aviation Wales GE Aviation Wales has supported the Welsh 3 Peaks event for the last 16 years.

The very first challenge was instigated by a group of GE Aviation Wales employees and a few members of the original team are still involved with the event.

On supporting the Welsh 3 Peaks Challenge, Mike Patton, Managing Director of GE Aviation Wales, said: “We are proud to support the Welsh 3 Peaks challenge. Tˆy Hafan provides an extremely important service to the local community and the hospice supports hundreds of children and their families all year round.

“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.”

more events 29 June

Family Fun Day at Tˆy Hafan

7 September

Tˆy Hafan Taff Trail Cycle Challenge

7 September Cardiff 10k

21 September

Admiral Swansea Bay 10K

28 September

Men’s Health Survival of the Fittest (Cardiff Bay)

5 October

Cardiff Half Marathon 2014

25 October

Snowdonia Marathon

more than 5,000 people have travelled from all over the world to undertake the challenge

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our news and stories our news from and t yˆ hafan stories029 at 2053 t yˆ hafan 2199

www.tyhafan.org

children’s hospice week Children’s Hospice Week is the UK’s only awareness raising and fundraising week for children with life-limiting conditions and the services, like children’s hospices, that support them.

This year’s Children’s Hospice Week (13 – 20 June) will focus on the incredible round-the-clock care provided to life-limited children by families, professionals, children’s hospices and other support services across the UK.

hero friday Children’s Hospice Week 2014 culminates with Hero Friday.

We’ll be celebrating all the heroes who help care 24/7 for children and young people with life-limiting and life-threatening conditions.

we all need heroes Dress up as your hero and help raise money to provide 24/7 care for seriously ill children. It could be your favourite pop star, actor, sports personality or superhero. Or maybe your hero is a family member or friend that’s made a world of difference to you.

Join us this Children’s Hospice Week by fundraising for Tˆy Hafan and celebrate all the heroes who help care for life-limited children. Visit www.tyhafan.org for more information.

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

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

£25

£15

£50 Other

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

£10

£15

Other £

I would like to make my donation on:

£

Office use only: CWTS14

2. Your Payment

a

5th of every month

I have enclosed cash / a cheque / CAF voucher (delete as appropriate) made payable to Tyˆ Hafan.

I would like to pay by credit / debit card Debit my Mastercard / Visa / Debit

23rd of every month

Instruction to your bank or building society to pay by Direct Debit Name and full postal address of your bank or building society Service User Number

Cardholder’s name

2

Address of cardholder (if different to below)

To: The Manager

4

9

5

0

0

Bank/Building Society

Address

Card Number Expiry Date

Postcode

Security No (Last 3 digits on reverse of card)

/

Name(s) of account holder(s) Bank/Building Society account number

Issue Date

Branch Sort Code

Debit cards only - Issue No

/ Signature(s)

Instruction to your bank or building society Please pay Tyˆ Hafan Direct Debits from the account detailed in this Instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this Instruction may remain with Tyˆ Hafan and, if so, details will be passed electronically to my bank/building society.

Date

Date

Signature(s)

Banks and building societies may not accept Direct Debit Instructions for some types of account.

3. Your details

Your details Title

Forename

Surname

Address

Tel

4. Increase your donation

Email

Postcode D.O.B.

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.

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hold a tea party for tyˆ hafan

Help raise funds for our 15th birthday www.tyhafan.org/teaparty

Use our poster to promote your own tea party

cuppa anyone?