Tŷ Hafan Newsletter Spring/Summer 2014

15 years of being there

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

leigh halfpenny opens hydrotherapy pool p.14

brighten a life at our neon nightp.2015 years of being there

cwtchour news and stories from ty hafan

newsletter spring/summer

2014

contents15 years of being there ................................................. 02our timeline .................................................................... 04ty hafan tea party ........................................................... 06willow’s story .................................................................. 08every child leaves their mark ......................................... 10thank you ........................................................................ 11rhydian’s story ..................................................................12leigh halfpenny opens hydrotherapy pool ................... 14charity abseil for ty hafan ............................................... 16devils take to the ice with ty hafan ................................ 17christmas panto .............................................................. 17work starts on new playground .................................... 17bridget’s challenge ......................................................... 18rainbow run .................................................................... 19midnight sleep walk ...................................................... 20welsh three peaks .......................................................... 21children’s hospice week ................................................ 22helps us be there for another 15 years... ..................... 23

welcomeWelcome 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.

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.

Ty 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 Ty 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

70% of families receive support in

the community

We now have to raise £3.7m every year to run our services

compared to just £1m in 1999

15 years of being there

2

newsletter spring/summer 2014cwtch our news and stories from ty hafan 029 2053 2199 www.tyhafan.org

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 Ty Hafan - Wales’ first children’s hospice.

15 years of being thereResearch 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 Ty Hafan Appeal in 1994. In the same year, the Princess of Wales became a Patron of Ty 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 Ty Hafan and haven’t looked back since.

3

newsletter spring/summer 2014cwtch

our timeline 1990

Ty Hafan registers as a charity.

1993Site obtained in Sully for the building of the hospice.

1994South Wales Echo launches Ty Hafan

Appeal.

1994Princess of Wales becomes patron of Tyŷ Hafan.

1995Pavarotti holds concert in Cardiff to raise money for Tyŷ Hafan.

1996Building of the hospice commences.

2001HRH the Prince of Wales

becomes patron of Tyŷ Hafan and makes his first visit to the hospice.

2003 Ty Hafan increases to a seven day service.

2004Tyŷ Hafan founder Suzanne Goodall is awarded an MBE in the Queen’s New Year’s Honours.

1997The hospice building is

handed over to Tyŷ Hafan for fitting and equipping.


4

our timeline Cath Thompson, Head of Care Services at Tyŷ 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 Tyŷ Hafan:

2005Expansion of family

support team.

2008Tyŷ Hafan launches the first ever scout group for a hospice in Wales.

2009Tyŷ Hafan rebrands and celebrates its 10th birthday.

2011 BBC Wales screens

four-part series, Beautiful Lives.

2012Tyŷ Hafan creates

Education and Research department.

2013 Tyŷ Hafan receives awards from the Royal College of Nursing.

2014Tyŷ Hafan celebrates its

15 year anniversary.

“It is hard to imagine that a chance conversation in 1997 with TyŷHafan’s first Director of Care would have resulted in me spending nearly half my nursing career at

Tyŷ 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 Ty 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.”

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 Ty Hafan at a recent conference. She said: “I simply couldn’t have coped without Ty 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...

Jeff Griffiths is an active member of our dads’ group and volunteers for Ty 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.”

5


Shopping list

3 £250 could pay for a day of

outreach support

3 £1,500 could pay for a week of

outreach music therapy

3 £60 could pay for an hour of

family support

3 £75 could pay for an exhausted

mum to receive an hour of complementary therapy in her

home

celebrate our

with a tea partyAs 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 Ty 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 Ty 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 Ty 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


6

15thbirthday

cwtchcorner“We love going

to Ty 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 Ty 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 Ty 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


7

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

15thbirthday

willow’s storyKelly 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 Ty 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 Ty 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.”

“Ty 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.”

Ty 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 Ty Hafan, she wouldn’t be achieving her full potential,” said Kelly. “Every time she stays at Ty Hafan, we can see her developing.”

“When we were told she held a rattle for the first time at Ty 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 Ty 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 Ty 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, Ty Hafan is where we’ll want to be.”

The couple can’t thank Ty 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 Ty Hafan, she wouldn’t be

achieving her full potential”


8

willow’s storyblooming 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 Ty Hafan Ambassador and Rhona is a volunteer who helps out with our lottery and raffle draws.

festive fun raffleThis year’s Ty 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.

“Having that break helps us cope so we can carry on with the

next few months”

Crackerjackpot is a fantastic way to support Ty 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 visitingwww.lottery.tyhafan.org or by calling us on 029 2053 2300.

in support of


9

snippet stories

Did you know?One in five

children referred to Ty Hafan is cared for through a gift

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

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 Ty Hafan to find his room decorated with all the things he loved the most – the Cookie Monster and Kermit were everywhere.

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.

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.

Archie has left his mark on all of us at Ty Hafan in so many ways. To mark our 15th birthday, we’re asking our supporters to consider leaving their mark on Ty Hafan too – with a gift in their Will.

Helping us in this way means Ty 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 [email protected]. You can also visit www.tyhafan.org/gift-in-a-will

every child leaves their mark Since 1999, almost 600 children have

left their mark on Ty Hafan. One of those children was Archie Watson.

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

date for your diary

Write a Will campaign 12-23 May 2014

Solicitors across Wales will be offering Ty Hafan supporters the chance to

write a Will for just £50.


10

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.

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

thankyou


11

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

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 Ty 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 Ty 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. Ty 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 Ty Hafan, we would have been forced to drive two-and-a-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 Ty 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

Little Rhydian and his family were referred to Ty 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.

rhydian’s storyPh

oto

© C

hris

toph

Soe

der


12

Multiple Sclerosis and is also in and out of hospital. Ty 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 Ty Hafan, it’s likely Les would have to give up work. We try to keep family life as normal as possible and Ty Hafan allows us to do that,” said Carys. The family also benefit greatly from Ty Hafan’s outreach

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.

“Ty 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

to be visually stimulated.” She added: “This list goes on and the support never stops. Ty 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.”

We need your support to continue providing support to families like Rhydian’s. To make a donation, please visit www.tyhafan.org

mums on tourTy Hafan mums had a fantastic time when they went Christmas shopping in Bath. Here is a picture of them enjoying their well-deserved treat!

rhydian’s story

dads’ army!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.

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

snippet stories

Rhyd’s favourite jokeWhat do cows

eat for breakfast? Mooseli!


13

The state-of-the-art hydrotherapy pool provides a

fantastic environment for therapy,

communication, socialisation

and play

ra

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 Ty 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 TyŷHafan 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.”

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

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


14

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 websiteYou 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

snippet stories


15

cwtch

charity abseil for ty hafan17 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 Ty Hafan.

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

“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

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

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

£4,000 was raised to mark the hotel’s

partnership with the organisation

our news and stories at ty hafan www.tyhafan.org newsletter spring/summer 2014cwtch our news and stories from ty hafan 029 2053 2199 www.tyhafan.org

16

newsletter spring 2014

charity abseil for ty hafan

The Cardiff Devils took to the ice alongside some very excited children and their families on 26 February.

Nine families, supported by Ty 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 Ty Hafan.

“We have done a lot with Ty 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.

devils take to the ice with ty hafan

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

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

work starts on new playground

christmas panto


17

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

Ty 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: “Ty 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

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 Ty Hafan.

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

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

Bridget and Gareth have raised almost

£80,000 for a number of charities, including

Ty Hafan


18

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 Ty 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 Ty 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 Ty 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.

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

entrants must wear white at

the start and be plastered in colour

every kilometre

it’s about celebration, and having crazy fun

with friends

West Wales Rainbow

Run coming soon...

bridget’s challenge

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.

rainbow run


19

midnight sleep walkWe 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 Ty 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.

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

Imagine never having a good night’s sleep?

Register today at www.midnightsleepwalk.co.uk

This is the reality for many Ty 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.


20

29 June Family Fun Day at Ty Hafan

7 September Ty 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

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

more than 5,000 people have

travelled from all over the world

to undertake the challenge

more eventsGE 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. Ty 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.”

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.

He said: “I’m really excited to be taking part in the GE Aviation Welsh 3 Peaks challenge for Ty 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 Ty Hafan, the family hospice for young lives.

dads’ armyA group of dads of some of the children and young people supported by Ty 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 Ty 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 Ty Hafan and we’ll be continuing with our fundraising efforts for this amazing charity.”


21

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 fridayChildren’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 andlife-threatening conditions.

we all need heroesDress 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 Ty Hafan and celebrate all the heroes who help care for life-limited children. Visit www.tyhafan.org for more information.

children’s hospice week

our news and stories from ty hafan 029 2053 2199 www.tyhafan.org

22

cwtch our news and stories at ty hafan www.tyhafan.org

Please return this form to Ty Hafan, Hayes Road, Sully, CF64 5XX You can also donate at www.tyhafan.org or by calling 029 2053 2255

I would like to make a single donation of:

Office use only: CWTS14

I would like to make a regular donation of: £5 £10 £15 Other £

I would like to make my donation on:

5th of every month 23rd of every month

1. Your gift to families in Wales

Your detailsTitle Forename Surname

Address

Postcode

Tel Email D.O.B.

3. Your details

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

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

Cardholder’s name

Address of cardholder (if different to below)

Card Number

Expiry Date Security No (Last 3 digits on reverse of card)

/

Issue Date Debit cards only - Issue No

/

Signature(s) Date

Instruction to your bank or building society to pay by Direct DebitName and full postal address of your bank or building society

Service User Number

2 4 9 5 0 0To: The Manager Bank/Building Society

Address

Postcode

Name(s) of account holder(s)

Bank/Building Society account number Branch Sort Code

Instruction to your bank or building societyPlease pay Ty 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 Ty Hafan and, if so, details will be passed electronically to my bank/building society.

Signature(s) Date

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

2. Your Payment

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 Ty Hafan will reclaim 25p on every £1 that I give. This declaration also relates to all donations I have made to Ty Hafan in the past four years and all donations I make hereafter until I notify you otherwise.

4. Increase your donation

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

£15 £25 £50 Other

£

or

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 Ty Hafan will notify you (normally 10 working days) in advance of your account being debited or as otherwise agreed. If you request Ty 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 Ty 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 Ty 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.

✂

Help raise funds for our 15th birthday

✂

cuppaanyone?hold a tea party for ty hafan

Use our poster to prom

ote your own tea party

www.tyhafan.org/teaparty

Date post:	09-Mar-2016
Category:	Documents
Upload:	ty-hafan
View:	213 times
Download:	0 times

Tŷ Hafan Newsletter Spring/Summer 2014

Documents