Cwtch Newsletter Spring/Summer Edition 2013

Newsletter: Spring/Summer 2013

Inside... • X Factor visit • Cwtch Corner• Superheroes wanted!

cwtchthe family hospice for young lives.

providing care, being thereproviding care, being there2

welcome...

To the spring / summer edition of Cwtch.

We are continually overwhelmed by the support and generosity of the people of Wales. We simply couldn’t continue without you.

Did you know it costs around £10,000 to open our doors each day?

This figure is likely to rise because we are seeing more and more life-limited children, young people and their families in need of our services.

We know times are hard, which makes us even more grateful to everyone who has played a part in supporting our vital work across Wales.

We thought we would let Amy-Claire explain how Ty Hafan makes a difference to her:

“When the Palliative Care Consultant told mum and dad and of course me that I was being referred to a hospice we knew it wasn’t good. I was a pretty poorly young person.

It ’s had many names this disease of mine. ACD syndrome is one of them – they are my initials by the way. But in reality, I have no diagnosis.

We were invited to go to Ty Hafan for lunch one day in December some four years ago. I thought it would just be another hospital with different coloured walls. Oh my, how wrong I was.

From the moment we set foot in there we all felt a sense of calm. Not a sad calm, but a nice calm that makes you feel safe even when you have the butterflies in your tummy. I get those sometimes when I think about what’s happening to me and my family. I get scared and

www.tyhafan.org

welcome...wonder what my future may bring or not as the case may be. It’s not easy sometimes.

It’s a bit like a secret club that you don’t want to be in unless you have no choice, and then if you have no choice it ’s the only club you want to be in. It ’s truly amazing!

They let me be me with all the baggage - the terrible spasms, the screaming back pain, the abundance of medication that takes hours to administer, the feed pump, the catheter and so forth.

See the thing is I am sick. I am a young person with very unpredictable health, but underneath it all I am still me - the teenager wanting to go night-clubbing, watch bands and I am still waiting for the love of my life to whisk me off my feet. Ty Hafan recognises that in me.

So my journey with Ty Hafan isn’t a sad one like people assume when they think of a hospice. No, it’s a journey that has given me an abundance of happy memories.

With Ty Hafan by my family's and my side, my life has become a life worth fighting for.

I hope that everyone continues to support Ty Hafan. It really does make such a difference.“

Amy-Claire Davies Aged 18

3www.tyhafan.org

providing care, being there4

x-tra special surprise!Youngsters at Ty Hafan were treated to an extra special surprise when stars from the X Factor turned up to bring a little sparkle into their lives.

Singers from the show including winner James Arthur, Rylan Clark, Ella Henderson, Jahmene Douglas and groups Union J and District3, were all on hand to provide an entertaining afternoon for the children and their families at the Hayes Road hospice.

There were plenty of smiles all round as the singers spent time with babies, toddlers and young people.

Lewis Gasson, a huge James Arthur fan at Ty Hafan, said it was “amazing” to meet the stars. The 12-year-old from Cardiff, who suffers from Duchenne Muscular Dystrophy, said: “We had such a good time. I’m so pleased that I met them all."

Rylan Clark clearly enjoyed the afternoon. Shortly after leaving he tweeted: “What an inspirational bunch of people at Ty Hafan children’s hospice. Thanks for a great visit. See you all soon. ”

Ella Henderson also tweeted: “What incredibly strong families at

Ty Hafan hospice x x pleasure meeting u all!! ... & thank u for my drawing!”

x-tra special surprise!The visit was organised through Together for Short Lives, the UK charity for all children with life-threatening and life-limiting conditions and all those who love, support and care for them.

All the proceeds from James Arthur’s winning single, "Impossible", will be donated to Together for Short Lives to support children’s hospices like Ty Hafan and other voluntary organisations to sustain their vital work.

5www.tyhafan.org


casey’s storyCasey was born with extensive brain damage following complications at birth. He has since been diagnosed with severe epilepsy, spasms, cortical visual impairment and evolving cerebral palsy.

His condition means he needs 24-hour care and it ’s unlikely he will ever be able to walk or talk, placing a huge strain on the whole family.

Ty Hafan’s support is needed now more than ever because his dad Anthony is battling a brain tumour for the second time. The whole family have been devastated by the news but are comforted by the knowledge that they

don’t have to face their journey

alone.

The Newport family have visited the hospice for short-breaks several times in the last six months, making sure that mum and dad have time to rest and unwind with nine-year-old daughter Reagan.

Mum Nahella said the referral couldn’t have come at a better time. “I really don’t know what we would have done without Ty Hafan,“ she said. “They have become an extended part of the family and have completely changed our lives.”

One-year-old Casey enjoys spending time at the hospice and is always smiling when he’s there. “You can see he becomes instantly comfortable when he arrives and he sleeps so much better as well,” said Nahella.

casey’s story

“He loves the sensory area and the arts and crafts room. He can’t see very well so the sensory elements are so beneficial for him.”

And the care doesn’t stop at the hospice. Shirley Valentino is Casey’s Family Support Practitioner and visits the family regularly at home.

Shirley said: “It ’s hard to imagine what Nahella and Anthony must be going through, but I give them the chance to talk, to share their fears with each other and help them have the energy to give Casey and Reagan the care and support they need.”

Reagan has joined Ty Hafan’s Super Sibs group, which gives her the chance to make friends with other children who understand what having a life-limited brother or sister is like.

It also means she can still have fun and enjoy her childhood, despite the amount of time that her mum and dad need to devote to looking after Casey.

“The hospice has had such a positive impact on us; not only do they care for all Casey’s needs, but they also support the whole family as well, “ said Nahella.

“It’s a really homely environment and I know it’s where we’ll want to be for end-of-life care. It is a truly amazing place and I can’t thank them enough.”

7www.tyhafan.org

Preparations are already underway for cinema club nights, gaming sessions and ‘sing along’ evenings.

The installation has been completed as part of the Together for ShortLives campaign, organised by Ian Morrish, sales manager at ISE. Mr Morrish said: "This has been another wonderful result and one that simply would not have taken place without the assistance of RGB Communications, and of course, the continued generosity of several manufacturers."

Thanks to the large range of products and all the time and hard work provided free of charge, the installation has saved Ty Hafan more than £10,000. These savings will help

support children and young people with life-limiting conditions and

their families across Wales.

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For some youngsters at Ty Hafan, even making a simple trip to the cinema is physically impossible.

The life-limiting conditions facing children and young people supported by the hospice can cause significant mobility problems which prevent their enjoyment of normal activities like going to see the latest film.

But now, thanks to a donation from RGB Communications, the cinema experience has come to them! The hospice is now the proud owner of a home cinema which boasts five wall speakers, a Blue-ray DVD player and a projector.

providing care, being there

the big screen comes to ty hafan

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ty hafan is new charity for st david'sWales’ leading shopping destination, St David’s Dewi Sant, has chosen Ty Hafan as its new Charity of the Year.

Throughout the year, staff and shoppers at St David’s will be encouraged to take part in a wide range of fundraising activities to support the charity’s work.

Ty Hafan will be visiting the shopping centre to promote fundraising events, hold bucket collections and highlight the charity's work through a variety of promotional activities.

A number of retailers located in St David's will also be donating the proceeds of their 5p carrier bag levy to Ty Hafan.

Frank Ady, Head of Business and Community at Ty Hafan, said: “We are delighted to have been selected as Charity of the Year for St David’s and look forward to working in partnership with them over the next 12 months.”


Archie Watson has been receiving end of life care at the hospice and his parents, Brad and Lauren, have been sharing their journey with others by writing a blog.

08/03/2013When Archie's breathing increased rapidly, we made the easy decision to call an ambulance and get him to hospital where it was confirmed following an X-ray that there were infections present in his lungs. A common fear for people suffering from Tay-Sachs.

24 hours later in line with Archie's end of life care plan, which we had only recently changed to "non intrusive care and comfort", we were taken to our local hospice Ty Hafan.

It became apparent that Archie was on shut down and there were obvious signs that he was giving up. That night was strange, the nurses here recommended we all get in to bed together, cwtch and have our sleep. Both Lauren and I, through tears, said goodbye as we held him and there were also a few laughs as we used our usual brand of humour to reminisce a few funny memories.

We didn't expect Archie to wake with us, nor did we expect he would still be here now seven days since going to hospital. Each day we say goodbye to our poorly son. Each day he is showered with more love than the day before. Each day we accept as the day and although it's hard, we know

A family’s journey

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Archie will be free of this disease and will meet his mates in heaven and do everything he has never done before.

Despite this fight which has surprised many and left us confused about when the day will be, we suspect as we have done that it is definitely close. It could be tomorrow, a few days, a week, maybe a little longer but we know this fight is using a lot of his energy and only Archie holds the answer to when his reserves run out.

We are now living in the hospice waiting for that moment. I can't imagine being anywhere else. We agreed as part of Archie's care plan that we would like him to pass here and it's the best decision we have made.

The staff at Ty Hafan have been wonderful and made everyday amazing for us whilst providing the best comfort Archie can get. They truly are amazing people along with all our

family, friends and the fantastic people with their Facebook messages which have kept us all going.

I joked with Lauren that they should have a Ty Hafan for old people; I'd love this to be a place to go when you're in your last days of old age. I love them both dearly and whatever happens over the next few days (only Archie knows), I know that my boys are going to be alright.

Brad Watson Read the family's blog at http://www.caringbridge.org/visit/archiematthewwatson/journal

www.tyhafan.org

Tay-Sachs disease is a rare and usually fatal genetic

disorder that causes progressive damage to the nervous system.

In the most common form of the condition, symptoms usually begin at around five

months of age, when a previously normal child’s development begins to slow

and they gradually lose their ability to move.

providing care, being there12 providing care, being there

cleverly and ty hafan family open new shopWelsh boxer Nathan Cleverly joined 11-year-old Tyler Lane to open a new Ty Hafan charity shop in Barry.

Tyler, who was born prematurely with severe cerebral palsy, quadriplegia and limited sight, first visited the hospice in Sully in 2003.

His mum Lisa said he really enjoyed cutting the ribbon alongside the world light-heavyweight champion. “He was up at 4am as he was so

excited! Ty Hafan’s support means everything to us and Tyler really loves it there."

Cleverly, who has supported the charity for many years, said it was an honour to open the charity’s 22nd shop in Holton Road.

He said: "Ty Hafan is a charity that’s really close to my heart and I’m always happy to help out in any way I can. I have visited the hospice many times and I’m always inspired by the children who are facing such battles in their lives."

Our shops are always looking for donations of good quality clothing, bric-a-brac, toys and DVDs to sell, as well as volunteers willing to lend a hand.

For more details visit tyhafan.org or call 029 2053 2199

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cleverly and ty hafan family open new shop

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cricketer mark wallace becomes ty hafan ambassadorWelsh cricketer Mark Wallace has been inspired to help Ty Hafan, after witnessing the charity’s positive impact on his wife’s goddaughter.

As a way of showing his support, the Glamorgan cricket captain has joined Ty Hafan as an Ambassador.

He said: “My wife’s goddaughter was cared for by Ty Hafan before she sadly passed away. I have a real connection with the charity and I think they do a fantastic job in supporting not only the children, but the whole family as well.”

Wallace, who even has a Ty Hafan sticker on the back of his cricket bat, said he will help the charity in any way he can. In February he visited the

hospice and signed a cricket kit which was kindly donated by Cardiff-based entrepreneur Jacquie Williams.Wallace, originally from Abergavenny, added: “As it ’s a cause that’s so close to my heart I feel a great sense of pride to be joining as an Ambassador.”

John Barrowman and Lucy Owen are amongst the many celebrities who regularly support the charity.


cwtch corner

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cwtch corner

A huge 'Thank you' to everyone at Ty Hafan for all the care you've given Nathan during the past year and for your support to us as a family. You've been there to help us during difficult times and have remained such a big part of our lives. Nathan continues to gain strength, determination, smiles and his wicked sense of humour again and we've been grateful that you have shared such a positive year with us. Thank you to those who have now become our friends and extended family.Karen Davies

A massive thank you to the amazing people

at Ty Hafan. It was this Sunday last year

that our precious little boy Noah had an

emergency transfer from the Heath over to

Ty Hafan. We thought he only had a

matter of days to live, but Noah fought

hard and lived for another nine weeks. The

care and support that the amazing family

of Ty Hafan showed to us got us through

the hardest time of our lives. Ty Hafan

allowed us to just be Noah's parents for the

precious time we had left with him, and for

that, we will always be thankful. Ty Hafan

is such a special place. Thank you xxx

Hywel Tyler

You can count on my support. (Please use BLOCK CAPITALS)

Title ........... Forename .................................................... Surname ..............................................................

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Please return this form to: Ty Hafan, Head Office, Hayes Road, Sully, CF64 5XX

Ty Hafan values your support and promises to respect your privacy. The data we gather and hold is managed in accordance with the Data Protection Act (1998). We will not disclose or share personal information supplied by you with any third party organisation without your consent. By providing your details, you will be indicating your consent for Ty Hafan to contact you by email, letter or by phone to inform you about future fundraising activities and appeals, unless you have indicated an objection to receiving such messages by ticking a box below.

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For office use only ......................... (CWTA12)

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(if applicable) (last three digits on reverse of card)

nI am a UK taxpayer and I would like Ty Hafan to reclaim the tax on my donation through the Gift Aid Scheme (an extra 25p for every £1 donated). 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. For donations to qualify for Gift Aid you must pay income tax or capital gains tax equal

to the amount claimed in the tax year.


Play and activity provision is used to great effect at Ty Hafan. The charity was one of the first in the UK to establish a Toy Library which includes specialist equipment to stimulate and encourage children to express themselves through play.

We have spoken to Play Worker Paul Fisher about his role at Ty Hafan.

1) How long have you worked at Ty Hafan?

Ten years.

2) Describe an average day at Ty Hafan?

Each day can be completely different. It all depends on who is staying and what big events we have planned. My job generally entails decorating and personalising the children’s bedrooms, organising trips out, reading stories, playing games, driving the mini bus,

play worker, paul,answers questions

holding arts and crafts sessions, taking and compiling photos, the list is endless!

I also run a fathers’ group which means organising football training, challenge events, pool tournaments, golf days and so on. I also lead a group specifically for the teenage lads so they can meet up for food and a film; it gives them a chance to socialise and be themselves without parents being around. It also allows the parents to go for a coffee and enjoy a good catch-up themselves.

3) What are the biggest misconceptions about Ty Hafan?

I can say that when I first started at Ty Hafan I thought that it would be sad, quiet and have that hospital ‘clinical’ feel to it. Well I was wrong. Ty Hafan is a bright, colourful and happy place, full of smiles and fun! Yes, there are times

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www.tyhafan.org

play worker, paul,answers questions

when Ty Hafan can be a sad place but we focus on the memories that the children and families will be able to cherish.

5) What is your favourite memory of Ty Hafan?

I have so many great memories that it ’s hard to narrow it down to one, but I can list a few to give you an idea:

• Going to Download Rock Festival with some of our young people

• Every single sibling fun day – water fights!

• Being involved with the Three Peaks challenge and the team of dads’ who take part each year

• Being welcomed into a family’s home and then realising how important we are to them!

6) What has been your biggest achievement?

Being part of the adolescent and fathers group and watching the groups get bigger, stronger and better over the last few years.

7) Finally, describe Ty Hafan in three words

Family, Fun and Memories!

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Aaron is 13 but he was referred to Ty Hafan when he was just nine months old. At first we were terrified of taking Aaron to a hospice, especially as I thought a hospice was a place where people go to die.

Ty Hafan has supported us in so many ways – helping us to play with Aaron, allowing me to have some much-needed rest when Aaron isn’t sleeping and making Ty Hafan the best place that Aaron has ever been.

We are incredibly grateful to everyone who has made a donation to the Christmas Appeal. I can honestly say that your contribution will make a huge difference.”

Julie

thank you...We’d like to say a huge thank you to everyone that donated to our Christmas Appeal. Thanks to your generous support, a fantastic £24,000 was raised which will help families like Aaron’s get their new beginning this Christmas.

Since December, Aaron and his family have visited the hospice for short break care and are continuing to benefit from the emotional and practical support offered at Ty Hafan.

“I offered to tell my story for Ty Hafan’s Christmas Appeal because I want everyone to understand the difference they can make by supporting Ty Hafan.

McCune Albright Syndrome means Aaron can’t walk or talk and worst of all, he isn’t expected to live past the age of 19. In fact we’ve been told several times that Aaron has just days to live.

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Aaron’s Mum

the difference you can make

£23£23 could pay for an hour of emotional support from a family support practitioner.

£57£57 could pay for two hours of physiotherapy to ease the pain children and young people experience as a result of their conditions.

£90 could pay for three hours of outreach play therapy to encourage children like Aaron to reach their full potential, and giving mums like Julie the chance to interact with their children.

£90

£184

£184 could pay for a highly trained nurse to care for a child throughout the night, allowing Mum and Dad to get some much-needed rest.

thank you!To make an online donation, please visit www.tyhafan.org

22 providing care, being there

Top chefs from some of the most exclusive restaurants in Wales, London and beyond impressed some of the most discerning foodies in the country at a fundraising event in aid of Ty Hafan.

The third annual Chefs’ Night Out took place at the Thistle's Parc Hotel in Cardiff and raised more than £100,000 for the charity.

Chefs who have worked alongside the likes of Marco Pierre White and Keith Floyd produced exquisite food for 140 guests including rugby pundit Jonathan Davies.

chefs cook up a storm for ty hafan

The event’s organiser, Welsh businessman David Loosemore, has a very personal reason for wanting to support Ty Hafan as his six-year-old daughter Isabella has been having short-break stays at the hospice.

David said: “Knowing that Bella is being looked after by a remarkable team is extremely important to us. She really loves it there and has made some lovely friends. To see the way the care team look after her is amazing. Holding this fantastic event is a way to show my appreciation. I really can’t thank Ty Hafan enough for what they do.”

All of the chefs donated their time, food and wine for free in order to help support Ty Hafan in providing specialist palliative care services for children, young people and their families.

www.tyhafan.org 23www.tyhafan.org

chefs cook up a storm for ty hafan

It’s hard to imagine someone wanting to pay £200 for a broken stapler, but that’s exactly what happened during a live radio show on Real Radio.

Breakfast show presenters Jagger and Woody placed the item on eBay as a joke initially. To their surprise, the bids started to slowly creep up to £30.

After announcing to their listeners that they would donate the winning bid to Ty Hafan, interest from the public escalated.

jagger and woody raise £200 from broken stapler

Woody said: “Jagger pulled the stapler apart when he was bored and we thought we would try and sell it on eBay as a joke. Once we mentioned donating the money to Ty Hafan the bids came flooding in and we managed to raise £200.”

The support from Jagger and Woody didn’t stop there.

When they visited Ty Hafan to drop off the cheque they started talking to Jordan. He

happened to mention his dream of owning his own toy car which then inspired the presenters to mention his wish on their breakfast show the following morning.

To their delight,a south Wales businessman offered to donate a golf cart to Jordan which

he could customise to look just like his very own car!


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

Rhys suffers from Duchenne Muscular Dystrophy and he and his family were referred to Ty Hafan in 2005.

His mum and dad, Sharon and Mark, felt reassured that there was an organisation like Ty Hafan to call upon when life became more difficult.

Mark said: “We were overwhelmed by how welcoming everyone was when we first arrived. The care team are fantastic and we can’t think of a better place for Rhys to visit. He loves it and has made so many good friends as a result.”

Rhys uses a wheelchair but that doesn’t stop him having fun. He is often seen whizzing around the hospice, charming everyone he meets with his cheeky smile and wicked sense of humour.

Being able to talk to other boys with the same condition is a huge benefit for him. His best friend Lewis also has DMD and the pair have formed a strong friendship since meeting at the hospice.

“It ’s cool chatting to someone who knows what you’re going through,” said Rhys.

“I really like hanging out with him and we both love the den!”

When asked what he enjoys most about Ty Hafan, he said: “Everything. I love everything.”

for rhys, ty hafan is a place where he can enjoy being a regular 11-year-old.

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Blackbird Robin Spider

Squirrel Pigeon

Frog Beetle

Wordsearch expert Lewis has been busy again . After

enjoying a walk around the grounds of the hospice he

felt inspired to create a nature-themed puzzle for Cwtch

readers to enjoy!

M L E R R I U Q S BU S P L L L L J V ED R I B K C A L B ED Y G S P I D E R TB P E Z F F A C O LY Q O E B R X T B EV P N E A O O R I OS Z N P O O H G N S

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We are engaging with more people through social media than ever before. Our online community continues to thrive with over 2,000 people liking our Facebook page and almost 6,000 people following us on Twitter.

You can instantly become part of the Ty Hafan Facebook community and see what everyone, including families who visit Ty Hafan, have to say. And at the click of a button you can follow us on Twitter and keep a watchful eye on our famous friends and see how they are showing their support.

Top of the tweetsOver 400 superheroes have now registered for Ty Hafan’s #midnightsleepwalk get registered before you miss out! http://www.midnightsleepwalk.co.uk

This is me and Woody delivering a car to Jordan at Ty Hafan yesterday. One very

happy little boy. Popped into @tyhafan today to see @Amazing__Archie. Great to see him still fighting.

140 characters is not anywhere enough space to explore how great a place @tyhafan is.

Paper free!You could make a real difference to the life-limited children, young people and families who rely on Ty Hafan and it won’t cost you anything.

All you need to do is join our email list. By visiting www.tyhafan/join you can become part of our email group. Emails are a much cheaper way for us to keep in touch with our supporters and we promise not to overload your inbox. We’ll just send you all the best news, latest events and inspiring videos.

All we need is your email address. Please make a difference by signing up today.

reaching out


www.tyhafan.org 27

a chance to win, a chance to care

Elaine Davies, of

Newport, was delighted to

receive a telephone call telling her

she had won £3,000 in the Christmas

raffle. “I’m really happy,” she said. “It ’s a

really lovely late Christmas present.”

64-year-old Elaine, a regular Crackerjackpot

lottery player, said: “I was so surprised

when I found out I’d won! I am so glad I’ve

been able to support such a marvellous

charity. I know somebody whose

daughter has been there for short–

break care so I know from them

how brilliant it is.”

By spending just £1 a week you can support Ty Hafan whilst being in with a chance of winning a life-changing sum of money.

By becoming a member of Crackerjackpot you could have the chance to book a dream holiday, buy a new car and perhaps make some improvements to the home.

Back in 1998 the hospice began its own lottery and since that time it has paid out more than £1.5 million to lucky winners from all over Wales who have chosen to support Ty Hafan in this way.

Ty Hafan, which operates the largest hospice lottery in the UK, offers 81 guaranteed weekly prizes, a £2,000 top prize and the potential rollover jackpot of up to £12,000.

And by joining the Ty Hafan Crackerjackpot Lottery you are almost 30,000 times more likely to win a prize than with the National Lottery.

Crackerjackpot provides a consistent source of income to Ty Hafan, ensuring it can continue offering its vital services to life-limited children, young people and their families from across Wales.

in support of


Ty Hafan will be running its ‘Write a Will’ campaign between 13– 24 May.

The charity has teamed up with solicitors across south Wales to offer people the chance to have a simple Will written for just £50, giving supporters the opportunity to help make a real difference to life-limited children, young people and their families throughout Wales by leaving a gift in their Will.

An even greater incentive to finally getting around to making your Will is that during the period of the campaign a simple Will can be written by any one of the participating solicitors for a suggested minimum donation of £50 for a single Will and £75 for Mirror Wills suitable for couples, much less than the usual cost.

Why do you need an up to date Will?A Will is the only way to ensure your wishes will be honoured as you intend.

Even if you already have a Will, a change in your circumstances may mean you need to update it, to ensure your loved ones are provided for.

Having spent a lifetime working to build a life for you and your loved ones, allowing your estate to be in dispute once you’ve gone is an unnecessary risk to take.

Why support Ty Hafan with a gift in your Will? It costs £3.5 million to fund Ty Hafan’s care every year, and over the next four years we expect these costs to rise by another 28%.

1 child in 5 is cared for by a gift in the Will…

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1 child in 5 is cared for by a gift in the Will…

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Gifts in Wills fund the care provided to 1 in 5 of the children we support. Without them, we simply couldn’t support as many families.

Currently, 96% of the income received from gifts in Wills is used to fund the care we provide to the families in Wales that desperately need it.

We appreciate all gifts – large and small – and every pound received will make the lives of those who need our service a little bit brighter.

Visit our website www.tyhafan.org/writeawill or call our office on 029 2053 2270 to make your donation and receive your voucher.

Alternatively, you can email us on [email protected] with your questions.

Registered head office: Hayes Road, Sully, CF64 5XX / Tel: 029 2053 2199 Registered in Wales: No: 3077406 Registered Charity No: 1047912

* Suggested donation for a Simple Will only. A donation of £75 is suggested for Mirror Wills.

ty hafan - the family hospice for young lives

visit www.tyhafan.org/writeawill or call 029 2053 2270 to book.

write a Will for only£50*

book now!

May 13-24

with Ty Hafan and selected solicitors for two weeks only.

a mum's story


Kat Bancroft from Maesteg can’t remember what it’s like to go to bed and look forward to a full night’s sleep. That is because her 23 month old son Riley suffers from Interstitial Lung Disease and needs round the clock care to make sure his oxygen levels don’t drop below 95%. His condition means that he has a short life-expectancy. His breathing is aided by a ventilator at night and an alarm on his monitor will sound if his oxygen levels drop too low. Kat said, “Throughout the night I’m making sure his ventilator is connected, checking his oxygen levels and rocking him to sleep if his ventilator has fallen off.” Riley sleeps in the same room as his parents as it’s easier for them to keep an eye on him.

“If it’s a really good night I’ll get three hours sleep. I don’t think I get a full

www.tyhafan.org Registered Charity Number: 1047912.

Register now...

www.midnightsleepwalk.co.uk

midnight sleep walkfriday 10 may 2013millennium stadium, cardiff

Ty Hafan Mums are superheroes, be a superhero too!Help mums of life-limited children get some much needed sleep by giving up one night of your own.

Kindly sponsored by...

Water kindly donated by...exclusive sp

a prize for top fundraiser!

Supplied by...

sleep as such. My eyes are closed but it’s more of a rest than a sleep,” said Kat. And when she gets up she doesn’t just care for Riley’s needs but looks after her other young sons as well. “I’ll get the other three ready for school whilst constantly checking Riley is ok,” said Kat.

The pressure on the family can be intense at times but they have found some much-needed support at Ty Hafan.

They have visited the hospice several times for short-break care and have been “blown away” by the charity.

Kat said: “We were quite anxious before we arrived but we shouldn’t have been because everyone is so friendly and kind. The team are so supportive and we feel completely relaxed when we’re there.”


Register now...

www.midnightsleepwalk.co.uk

midnight sleep walkfriday 10 may 2013millennium stadium, cardiff

Ty Hafan Mums are superheroes, be a superhero too!Help mums of life-limited children get some much needed sleep by giving up one night of your own.

Kindly sponsored by...

Water kindly donated by...exclusive sp

a prize for top fundraiser!

Supplied by...


Water kindly donated by...

Help raise the £3million needed every year to support hundreds of families in Wales.

www.welsh3peaks.co.uk

#welsh3peaks

GE Aviation Wales welsh3peakschallengesaturday 15 june 2013snowdon . cadair idris . pen-y-fan

Documents

Cwtch Newsletter Spring/Summer Edition 2013