Cwtch - the Ty Hafan newsletter by Ty Hafan

cwtch

Newsletter: Spring/Summer 2012 Inside... • A total approach to care • Beautiful Lives at the Oscars • Paddington is reincarnated

welcome I was extremely honoured to be appointed chairman of Tyˆ Hafan in October 2011. I had been aware of Tyˆ Hafan for a number of years and had previously been involved in some of the events both as a volunteer and as a participant. What struck me when I was appointed was just how diverse an organisation Tyˆ Hafan is, and how little I really knew about it. Like me, many people will know of Tyˆ Hafan without really understanding what we do or how we do it. The recent documentary series "Beautiful Lives" will have made some progress in raising awareness I am sure. The hospice recently passed its thirteenth anniversary since its establishment. In that time the extent of the care provided to life-limited children, young people and their families has really changed,

providing care, being there

and as the awareness of Tyˆ Hafan and its services continues to increase so does the number of families we care for.

We are currently providing care to 225 young people and their families, and have cared for more than 500 since we opened. The range of medical conditions and the ages of the children we care for is also growing.

In the year from April 2010 to March 2011 there was a 115% increase in the number of children and young people referred to our service from the previous year and this year has seen a similar trend. This means that maintaining the levels of fundraising to provide the care and support their families need presents a constant challenge to us all in these difficult economic times. Tyˆ Hafan is fortunate to have had tremendous support from the people of Wales over the years for which I sincerely thank you all. All I ask is that you continue to give whatever you can to help us be there for those families who need our help.

In my short time here, I have been struck by the enthusiasm and passion of the people I have met. In my working life I have frequently met people who describe their role at work by starting with the word "just" – "just a trainee", or "just a volunteer" (maybe even "just" a chairman). I am sure that, you as supporters, would agree with me when I say that it is very important to remember that every job well done at Tyˆ Hafan really makes a difference to the families we care for. Nobody at Tyˆ Hafan is "just" anything - everyone plays their part in ensuring that our families have the very best care and support. Mervyn Ham Tyˆ Hafan Chairman

www.tyhafan.org

a total approach to care Children’s palliative care is an active and total approach to care. It focusses on improving the quality of life of the child and the family in every possible way by addressing the physical, emotional, social and spiritual aspects of care. It includes the management of distressing symptoms, the provision of short break care and allowing families to express their feelings from diagnosis. Here are some recent examples of the palliative care provided by Tyˆ Hafan: One young man had been admitted as an emergency to hospital from home. Tyˆ Hafan staff made daily visits to hospital to support him emotionally and spiritually as he moved towards the end of life phase of his condition. His wish was to have a weekend away, but both he and his parents realised the risks of doing this.

providing care, being there

However, with the support of Tyˆ Hafan, he was able to have his weekend away followed by a stay at the hospice to recuperate.

This was made possible by Tyˆ Hafan working in partnership with his family and community professionals. With this careful planning, risk assessment, openness and honesty, young people can live through all phases of their palliation helped by our philosophy of "how can we do it?" rather than "you can’t do it". One young lady was referred to our outreach music therapy service and despite feeling very poorly for much of the time, she still responds well to the stimulation of sound and the use of voice and song to communicate. She is very clear about what she likes and doesn’t like and is happy to play and explore instruments that make her smile or laugh. She is acutely aware

of everything going on around her and doesn’t miss a thing. Even on the days when she is feeling poorly, she visibly relaxes to the tone of the flute and she enjoys hearing songs and familiar music.

This is one example of how music therapy can support a child and their family, be it through gentle movements physically in order to play small instruments or responding positively and communicating. There has also been the positive outcome of working in partnership with the family, who can continue the sessions between music therapy visits.

How you can help... www.tyhafan.org/donate or Text 'LIVE04 £5' to 70070 to make a £5 donation

for your welsh copy please visit www.tyhafan.org/lets-cwtch

first minister visits hospice Just before Christmas, First Minister Carwyn Jones took time out of his hectic schedule to join Tyˆ Hafan to mark the start of work on the new hydrotherapy pool. After the formalities, the First Minister enjoyed a performance of Tyˆ Hafan’s annual pantomime, titled 'The School Nativity Play', performed by staff members. At the end of the pantomime, he helped Father Christmas give out presents to children and talked to family members about the support they receive from Tyˆ Hafan.

providing care, being there

our new hydrotherapy pool The existing pool was installed in the late nineties when the hospice was constructed and has served our children and families well.

The pool room will be able to be completely blacked out allowing for the full affect of the multi-sensory lighting and sound experiences.

However Tyˆ Hafan is now providing care for an increasing number of children with an age range of between less than one year old up to 19 years old. With increased numbers, a diverse variety of conditions and needs, together with a real requirement for privacy, a new pool with changing facilities is now needed.

Just some of the multi-sensory features will include:

The larger pool will accommodate more families at the same time and improve social fellowship supported by the latest multi-sensory sound and light equipment, essential for stimulating responses, particularly from hearing and visually impaired children.

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A dolphin / image projector onto the east wall which can be operated by a wireless floating switch on the water surface

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A programmable colour changing bubble screen on the east wall with an integral rear mirror to enable the children to see themselves through the bubbles

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A starry cosmos projector to create an evening sky / stars effect on the ceiling and around the room, which features the 'milky way'.

The £450,000 pool, has been part funded by generous donations from groups and organisations with further grant applications pending.

www.tyhafan.org

beautiful lives at the oscars It was just after the last issue of Cwtch went out that the people of Wales had the opportunity to watch the amazing BBC documentary "Beautiful Lives" and get to know some inspiring families who had agreed to be filmed and interviewed for the series which was screened in September. The documentary received some wonderful reviews and comments from both the media and general public. And as with all major film events we were determined to honour the families involved with their own Oscars ceremony,

which took place at the Copthorne Hotel, (thank you Copthorne for donating the room) on Thursday 18 August. The families arrived in their glamour to a Hollywood welcome of red carpet and paparazzi before finding their seats in the black and gold decorated room ready for the award ceremony. BBC newsreader Jane James was on hand to present the coveted gold figurines.

where are they now? Amy-Claire from Swansea continues to make the very most of every day with the same positive attitude which took viewers' breath away. She passed all the four GCSE subjects she took last year with flying colours and is planning to take two more this year.

Glamorous twins Catherine and Kirsty from Llanelli continue to greet each day with a smile despite both recently having a major operation. The family are looking forward to celebrating their 18th birthdays later this year.

Nicola and Steve from Tredegar greatly miss their wonderful son Ashley who sadly died just before the documentary was screened. With ongoing support from Tyˆ Hafan they are beginning to come to terms with life without Ashley and have recently moved house.

Sadly little Zoe from Swansea lost her amazing fight for life just before Christmas aged just three years old. Tyˆ Hafan continues to offer support to her family, particularly her four year old brother David.

Cheeky Jack and his family from St Mellons had a bit of a set back at the end of last year which saw Jack becoming quite poorly and being hospitalised for quite a few weeks. From there they came to Tyˆ Hafan for some rest and recuperation which resulted in them all being able to go home just before Christmas. He has since returned to school.

The Gruffudd family from Cardiff whose little boy Elis died at the hospice during filming miss him dearly and live each day with the hope that their wonderful memories will ease their journey.

To see more unscreened footage please visit tyhafan.org

for your welsh copy please visit www.tyhafan.org/lets-cwtch

a warm welcome to... fifteen year old Claire West and her family from Aberbeeg who came to stay for their first visit last October. Claire was diagnosed with congenital heart disease before she was born and has had numerous operations throughout her life, one which resulted in her suffering a stroke causing shortening to her right arm and leg. She had a pacemaker fitted in 2008 when she was eight years old. However Claire can still experience hypoxic or "blue" episodes which can last from a few seconds to a few minutes so she cannot be left on her own.

Claire is only able to attend school part time as she becomes easily exhausted and therefore socially she does not lead the life of a normal teenage girl. She and her family were absolutely delighted when they were accepted and invited to stay at the hospice. At TyË&#x2020; Hafan she will have the opportunity to make friends with others her own age and take part in the shopping trips, makeover sessions and general girly chats which she has so badly missed.

"All the staff at TyË&#x2020; Hafan are absolutely fantastic" said mum Michelle "they have been fabulous with Claire and I canâ&#x20AC;&#x2122;t thank them all enough". Pictured: Claire meeting Carwyn Jones and our CEO Ray

providing care, being there

wordsearch by lewis Word search by Lewis Gasson Places in Wales

Cardiff Cardiff Brecon

Carmarthen

Conwy

Brecon

Caerphilly

Sully

Prestatyn

Rhyl

for your welsh copy please visit www.tyhafan.org/lets-cwtch

Caring for a life-limited child or young person is an exhausting, round-the-clock labour of love. But imagine having two (or sometimes more) children in

the family who need this level of care. It is almost inconceivable to imagine how parents or carers cope. Here are some families we know...

maliha and azka

depends on her wheelchair to get around and more and more on her mother for her daily care.

Beautiful sisters Maliha and Azka Asif both suffer with the condition known as limb girdle muscular dystrophy. This type of muscular dystrophy, of which there are many, causes progressive weakness in the big muscles around the top part of arms and legs (hip, thigh and shoulder muscles). Usually it becomes apparent first in the legs before the arms.

Younger sister Azka is now eleven years old and began staying at TyË&#x2020; Hafan in April 2009. She sadly has lost her mobility over the last four or five months and now also uses a wheelchair.

At around six years old Maliha began to walk on the tips of her toes and tests confirmed LGMD. Since first coming to stay at TyË&#x2020; Hafan in November 2007 her condition has steadily deteriorated and she now

Both girls love to stay at TyË&#x2020; Hafan, where one of their favourite things is to be taken out shopping as well as having beauty sessions with the staff and spending time in the computer room.

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scott and emily Seven year old Scott Ward suffers from intractable focal epilepsy and has been experiencing seizures day and night since he was 11 days old. Over time these have become progressively worse and from the time he was nine months old they have become life-threatening. During his seizures he turns blue and can stop breathing. Scott now depends on his wheelchair to get around. He has an older sister Robyn who is unaffected but is very involved in Tyˆ Hafan sibling days and activities.

"The only way I can get through life is to take one day at a time. It’s impossible to plan ahead as no two days are the same" said mum Nicola. "All that matters is that Scott and Emily are happy and they have a good quality of life. And the smile I get from Scott, even after he has had a really bad night, makes everything worth while. People don’t believe me when I say I wouldn’t have things any other way".

Sadly Scott’s younger sister Emily has also been diagnosed with the same condition the pattern of which seems to be following that of her brother. Her seizures vary in severity and they can be difficult to control. Although she is currently mobile she can tire easily if walking any distance. With no awareness of danger she also requires constant supervision.

michael and samuel Michael and Samuel Gooding from Haverfordwest are both deficient in a specific growth hormone which has delayed their physical and mental development and at 13 and 16 they are both quite small for their age. They also have the condition known as hypohidrotic ectodermal dysplasia which means they have a reduced ability to sweat. Sweating is a major way that the body controls its temperature; as sweat evaporates from the skin, it cools the body. An inability to sweat can lead to a dangerously high body temperature (hyperthermia), particularly in hot weather which can lead to life-threatening medical problems.

providing care, being there

Recent years have seen them suffering less from life-threatening episodes of hypothermia but because of their compromised immune systems they can be more liable to recurrent and severe chest infections. Looking after these two lively boys who need constant care can put a huge strain on their parents who welcome the support from TyË&#x2020; Hafan. Michael and Samuel love going to TyË&#x2020; Hafan where they receive expert care and attention while mum and dad have a very well deserved rest.

giving the hospice a homely look Blankets made of squares of exquisite textile craftsmanship have been put to practical use at the hospice by housekeeper, Carole Jenkins. The first floor rooms at the hospice offer accommodation to any member of the family who wishes to stay while their child receives the very best of specialist care in the Care wing on the ground floor.

Carole has been housekeeper at TyË&#x2020; Hafan for over ten years and together with some dedicated volunteers, takes an enormous pride in making the hospice look as good as possible.

"We want all members of the family to have a relaxing end enjoyable stay in a comfortable and bright environment" explained Carole "so we try and make the family rooms look extra special. "The blankets we have used as decorative throws on the beds are absolutely unique and look fantastic. You notice another lovely detail every time you look at them". The works of art were made by ladies (and a few gentlemen) from all over Wales. They have formed part of a recent refurbishment programme at the hospice which is now complete.

www.tyhafan.org

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the difference you can make... We've made it even easier for you to make an instant difference to hundreds of Tyˆ Hafan families. You can now set up a direct debit payment online to give a regular monthly gift:

www.tyhafan.org/monthlygift Thank you! Your ongoing support is invaluable and helps to ensure our care services will be able to help families in Wales year after year.

£5 a month (£60 a year)

£5

could pay for three hours’ care for a life-limited child or young person, giving mum and dad a break and allowing some precious time to be spent with their other children.

£10 £10 a month (£120 a year) could pay for a session of music therapy at home, helping a lifelimited child to express themselves, improve their co-ordination and relax.

£21

If two people gave £21 a month (£252 a year) this could pay for a week of 24-hour telephone support, meaning worried mums and dads could pick up the phone day or night to speak to someone.

We need just four people to give £41 a month (£492 a year) to give a family a whole weekend of short break care at our hospice. This includes all their accommodation, food and drink and 24 hour specialised nursing care for their life-limited child.

£41 Whilst we try hard to ensure your payment will go to the area of support that you have chosen, we may not always be able to allocate funds in this way due to over-subscription or demand. Any over-subscription or surplus from your gift, after all costs of your chosen area of support have been met, will be used for the charitable purposes of Tyˆ Hafan and will be spent for the benefit of the children, young people and families using our care services. Please be assured every gift will continue our care provision programme and assist in m aking the lives of the children and young people as comfortable and enjoyable as possible.

cwtch corner

here come the girls... A few teenage boys had a treat on Sunday 27 November when the staff from Hooters restaurant came along for a visit. Last year the restaurant also kindly hosted the 16th birthday party for Jack Thomas, one of the stars of "Beautiful Lives", which was included in the documentary.

"Like" us on Facebook and post a message on our wall. We'd love to hear from you! 20

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www.tyhafan.org/facebook

r the word.

www.tyhafan.org

what's new online? Facebook

We’ve moved to a new home on Facebook – it’s a page! We can keep you updated on all our latest news, events, videos and pictures. So if you’d like to like us we’d like that very much – in short please like our page here www.tyhafan.org/facebookpage ...if you'd like.

Youtube

If you’ve got a spare five minutes and want to learn more about Tyˆ Hafan then why not watch our videos on YouTube. We’ve got videos covering everything from our events to first hand accounts of what your support means to the life-limited children and families who rely on Tyˆ Hafan. Visit www.tyhafan.org/youtube

Twitter

We’ve got a burgeoning Twitter community with over 2700 followers! Assuming you don’t think twitter is the name of some amusing bird call and you want to keep abreast of all the latest Tyˆ Hafan news then you should join our chorus – www.twitter.com/tyhafan

providing care, being there

No these weird black and white squares aren't alien symbols from another planet. These odd images are called QR codes. They’re a bit like the bar codes in the supermarkets only more clever. If you’ve got a smart phone then you can download a free QR reader (from your app store), scan the code and it’ll take you right to the link – saves all that typing!

fundraising just got easier For those of you that don’t use fundraising pages already, two very useful internet tools to help you fundraise are becoming increasingly popular:

You can now raise money by text for Tyˆ Hafan using your very own unique code. You may have seen the TV advertisements recently featuring SWIM36. It really is simple to go online and create your free JustTextGiving code, promote your event or campaign and receive donations direct to your own JustGiving page.

uk.virginmoneygiving.com

It couldn’t be easier; it’s fun and it’ll make a world of difference to the children and their families. justgiving.com Tyˆ Hafan has signed up to both Virgin and JustGiving and we hope that this will make it quick and easy for you to collect sponsorship or donations. It’s great for us because we get the money promptly, including Gift Aid, which is currently 25% on top of your donation. It’s also easy for you because you can contact your friends and supporters to make donations online. It’s fun setting up your own page and watching the money (and the comments) come in.

How you can help... www.tyhafan.org/donate or Text 'LIVE04 £5' to 70070 to make a £5 donation

do you have the will to help? From 16-27 April select solicitors across south Wales have agreed to prepare Wills in return for donations to Tyˆ Hafan. We would be delighted if you could provide a donation of £50 for a single Will*, £75 for mirror Wills or £30 for a codicil. Appointments are limited so contact our Legacy Officer, Clare Waters on 029 2067 2056 for more information.

ou Wh e n y te r o ke d a f lo e ay v a h s , yo u m o e n o d e t your lov g a gif t in d lu c if t, r in conside our Will. Any g y a n in Tyˆ Hafa ill make w , ll a r sm n c e. large o dif fere e iv s s ma

providing care, being there

*This offer applies only to a simple Will or codicil and availability is limited. At the initial meeting with your solicitor, you will be advised if your circumstances will require a more complex Will and if so, the solicitor may charge an additional fee. We will refer you to the nearest participating solicitor.

Did you know... from 6 April 2012 a reduced rate of Inheritance Tax will apply when 10% of a net estate or more is left to charity?

business and community Congratulations and a big thank you to the employees from local companies who took part in the hospice Christmas pantomimes and made them such a success. Everyone enjoyed the interaction with the staff and most of all meeting the children and families, and have pledged to continue to fundraise during this difficult economic time.

Tyˆ Hafan would like to extend a big thank you to Asda and Real Radio who worked in partnership to launch this year’s Christmas toy appeal. A special thank you to Asda customers for their outstanding public support.

Thank you to all the companies who continue to support and donate their fantastic produce to the hospice including Braces Bakery, Copas Turkeys and Sub-Zero Ice Cream.

a bag can go a long way... As a result of the Welsh Government's directive introducing a carrier bag levy charge last October, we are being supported by large retailers such as Next PLC and the Arcadia Group as well as many local retailers such as Clive Road Stores in Cardiff.

To take part and do your bit for Tyˆ Hafan using the levy charge, contact Diane Stringer on 029 2067 2080 or email diane.stringer@tyhafan.org

www.tyhafan.org

Since it began all the way back in 1998, Crackerjackpot, the Tyˆ Hafan Lottery has raised a grand total of

This year over 350 Crackerjackpot members have won a cash prize and donated it back to Tyˆ Hafan. This generosity has raised a total of £4,000 – thank you very much!

thank you to everyone who supported the new year prize draw! Mrs Mary Price from Pontllanfraith was "delighted" to receive a phone call telling her that she was one of the two lucky winners of the Tyˆ Hafan New Year Prize Draw with a choice of

£18.5 million.

We have 8,627 members who have supported Tyˆ Hafan by playing the lottery for over ten years. These loyal individuals have allowed us to ensure that our care services have a steady income stream year after year. Your ongoing support really does mean the world to the families Tyˆ Hafan supports.

amazing prizes including a John Lewis shopping spree, a luxury holiday or a tank full of petrol for a year. Tyˆ Hafan runs the largest hospice lottery in the UK and the income it generates makes a significant contribution towards providing its services to well over 200 life-limited children, young people and their families from right across Wales. The prize draw runs bi-annually and this New Year Prize Draw raised over £74,000. For more details on how you can play our lottery please visit www.tyhafan.org/crackerjackpot or call 029 2067 2062.

providing care, being there

chef roger works his magic Families and staff had a real treat on New Year’s Eve when Michelin star chef Roger Jones dropped in to cook a fantastic lunch with help from the hospice’s resident kitchen staff and volunteers. Roger who runs The Harrow in Little Bedwyn in Wiltshire became aware of Tyˆ Hafan when he took part in "Chefs' Night Out" at the Mercure Holland House Hotel last September. The fundraising event, organised by David Loosemore, the father of a little girl who uses the hospice, saw 17 wellknown and respected chefs produce

a wonderful three-course dinner for their particular table of ten guests. The New Year menu at the hospice consisted of a starter of Lobster and Scallop Fish finger with Crab Salad or Chilled Beetroot Soup with Creamed Roquefort and Caviar. For the main course there was a choice of Fillet of Wild Cornish Sea Bass with Truffles or Welsh Black Beef Korma with a dessert of Chocolate Dessert Platter.

Thank you Roger and friends.

paddington is reincarnated Still feeling devastated after an original Paddington Bear was stolen from the Tyˆ Hafan shop in Cardigan, imagine the amazement and delight of Retail Operations Manager, Alan Drury, when he received a package containing a beautiful original drawing of the famous bear himself - from no other than the illustrator of the legendary Paddington books, R W Alley. The artist who lives in the USA had picked up the story about the stolen bear via his Google alert and obviously thought he could help to put matters right by producing one of his famous ink and watercolour masterpieces for Tyˆ Hafan.

providing care, being there

"You can imagine everyone’s excitement here when we realised what it was" said Mr Drury. "It is an extremely kind and generous gesture by Mr Alley and I have contacted him to thank him on behalf of all the families and staff of Tyˆ Hafan".

For the time being the drawing will be framed and hung in a special place at the hospice for everyone, particularly the children, to enjoy.

news from the shops Tyˆ Hafan opened the doors of its newest shop in Merthyr Tydfil on 15 December 2011. There are plans to open at least three new shops this year, so keep checking the website for details. Our Aberdare shop has recently undergone a major makeover as part of our on-going refurbishment of all of our shops. The shop was reopened by the Boggis family, who are regular visitors to the hospice, and BBC Radio wales presenter Roy Noble.

Time to spring clean your wardrobe? We always need your good quality clothing and household items to keep our shops looking full and fresh, You can take your items to any Tyˆ Hafan shop, and don’t forget to ask about gift aid too when you make your donation as we can claim an additional 25p back from the taxman for every pound that we raise from the sale of your items if you are a UK taxpayer. Time on your hands? Our shops are always in need of additional help and support from volunteers who can help in preparing stock for sale, or on the shop floor to help maintain our high levels of customer service. If you would like more information about volunteering, please call Alan Drury on 029 2067 2067 or email alan.drury@tyhafan.org

www.tyhafan.org

our fundraising events Give up one night’s sleep for women who give up every night’s sleep, on Friday 4 May 2012 starting from the Millennium Stadium at midnight.

Take part in this year’s Midnight Sleep Walk with a new six mile route to help these mums and enjoy a great girly night out with your friends.

We all have times when we have a bad night’s sleep. Tossing, turning, seeing every hour on the alarm clock, resulting in hippo sized yawns come morning, grumpiness and eyelids like sandpaper. Thankfully for most of us it happens once in a blue moon – but imagine you were a mother of a child with a life-limiting condition and it happened every night.

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Ten years of the Taff Trail Cycle Challenge! The Tyˆ Hafan Taff Trail Cycle Challenge will take place once again on Sunday 2 September 2012. This year we will celebrate ten years of the event which has raised an amazing £340,000 for Tyˆ Hafan since it was launched in 2002. Teams are challenged to cycle 55 miles from Brecon to Cardiff along the Taff Trail whilst encountering some of Wales’ most iconic scenery on route. The less adventurous are encouraged to take on the 28 mile Half Taff Challenge from Merthyr to Cardiff passing through the charming villages of the Welsh valleys. The Full Taff event has been sold out within weeks of registration opening in the past so be quick!

Will you take gold, silver or bronze? Over 30 teams of ten will battle it out on Saturday 21 July 2012, representing various countries, striving to win the coveted Tyˆ Hafan It’s a Knockout Olympics gold, silver or bronze medals. This is good old-fashioned inflatable fun and great for team building and motivation, as well as a fantastic family day out. Entry is £100 for a team of ten. To enter, all we ask is for each team member to raise £55 sponsorship and turn up in Olympic themed team fancy dress! Join us at the South Wales Police Sports Ground in Bridgend for inflatable fundraising fun!

www.tyhafan.org

tyˆ hafan events 2012 sunday 25 march 2012

do you dare

Dare Valley Country Park, Aberdare

friday 4 may 2012

midnight sleep walk Millennium Stadium, Cardiff

saturday 23 june 2012

welsh3peaks challenge Snowdon, Cadair Idris, Pen-y-fan

saturday 21 july 2012

it’s a knockout South Wales Police Sports Ground, Bridgend

sunday 2 september 2012

taff trail cycle challenge Brecon / Merthyr to Cardiff

self Add your nts to our eve st mailing li / afan.org w w w.t yh ail r m or e m e v e n t s -f o rg t yhafan.o e v e n t s@

www.tyhafan.org Tyˆ Hafan - the family hospice for young lives. St. Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff CF5 6ES Tel: 029 2067 2060 Fax: 029 2067 2061 Registered Charity No: 1047912. Tyˆ Hafan® is a registered trade mark. (feb12)