cwtch

Newsletter: Spring / Summer 2010

Inside... • Take a tour• 'ome from 'ome• Captain Jack visits Ty Hafan

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welcome...to the spring / summer edition of Cwtch.

Hiya. My name is Amy-Claire. I am fifteen years old and I have a very complex and undiagnosed condition. I am writing this article about my very first visit to Ty Hafan.

When I was first referred to Ty Hafan I felt scared, upset and anxious. Facing death at 15 is not what you expect from life! How was I supposed to tell my friends and family that I was using a hospice? I was worried that Ty Hafan would be just another hospital, except maybe with nicer coloured walls. I thought it would be a very serious and sad place.

However, when me, my mam and dad were invited to the hospice for the day, my

opinion changed almost instantly.

When we drove into the icy car park we were greeted with a view of a large white house and a pretty garden that was covered with snow. Immediately it was peaceful and calm but in a positive way.

We were shown around by Jane, who is lovely, and we got to meet some other children who use Ty Hafan and some very friendly staff who I chatted to about things like my favourite bands, shopping (I love shopping!) and my "bucket list".

My first visit went without a hitch, apart from when my dad, at the sight of the Jacuzzi, remarked (very loudly), "you’d die to come here, wouldn’t you?" This was a bit embarrassing but my family now finds it very funny!

After being shown around I now think Ty Hafan is like a big, fun-filled home that just happens to have some hospital equipment in it. I think that the way Ty Hafan is decorated is very cool; I’m even stealing their idea of a handprint wall for my bedroom!

providing care, being there

3www.tyhafan.org

By using Ty Hafan I hope that I will have the chance to make some new friends who understand what it’s like to live with a life-limiting condition. I hope that it will help my family and friends come to terms with my condition while my parents get the chance to recharge their batteries. But most of all I know that it is going to give me some very happy and very important memories.

I hope that everyone continues to support Ty Hafan so that children like me can continue to find support and joy there.

Amy-Claire DaviesAged 15

Some of my favourite things about Ty Hafan are the music room (especially the piano and the electric guitar), the well-stocked art room, the Jacuzzi and the adolescent room. I also think that the garden would be a lovely place to sit and read in the summer.

The staff are very friendly, full of fun and I could see myself enjoying my time both in the hospice or going out and about when I go there.

But my most favourite thing about Ty Hafan is that it is like a home away from home. It is a place where children and young people like me can go to enjoy themselves in a positive atmosphere with other children in a similar position to themselves.

It is a place where parents and carers can go to have a well-earned rest and relaxation. And as much as I love my mam and dad, and they me, we still need a break from each other especially as I don’t go to school now.

For the first time ever, Ty Hafan was able to stay open throughout the whole of the festive period, providing a real home from home Christmas and New Year for families from all parts of Wales.

The children, young people and their families made full use of the facilities which include the lounge with comfortable squashy sofas, a huge plasma screen television, not to mention the family-sized hydrotherapy pool, the multi sensory room and the soft play area. Instead of spending hours in the kitchen preparing Christmas lunch, mums and dads had the treat of just sitting down and putting their feet up while head chef Jayne Jones and her assistant prepared a home-cooked feast for the whole family.

65 mums went on the annual Christmas Shopping trip to Bath which was organised by the Family Support team at Ty Hafan. As usual, no one was allowed back on the bus without first proving that they had bought at least one thing for themselves!

Santa was ready to deliver presents to the hospice but his sleigh broke down along the way, so he had a lift from a south Wales Police helicopter! The Royal Welsh Guards also paid a visit, complete with regimental mascot.

a family christmas at ty hafan

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Santa had so many presents that he had to come back! He was able to use his normal mode of transport this time.

The Cardiff City football players also joined in the festive fun.

Dedicated staff put on two panto performances a week for the children and their families throughout December, as well as providing the necessary day-to-day care. This year’s panto was "Cinderella" with a bit of a twist as it involved Snow White and the Seven Dwarves, Jack and the Beanstalk and Dick Whittington!

www.tyhafan.org

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william's storyWilliam has been spending time at Ty Hafan since he was a baby when he was diagnosed with cerebral palsy. He is severely disabled, partially-sighted and is prone to seizures.

When William and his mum went to Ty Hafan for their first visit they were bowled over by the surroundings, facilities and staff.

"It was absolutely fantastic" said William's mum, Zena. "Although I chose to stay with William on the first visit I could see he was so at ease with the staff that I knew I could leave him with them and know that he was being expertly cared for. They are all very professional and don’t seem to be fazed by anything."

William loves the one-to-one attention and care that he receives at Ty Hafan. Cuddles are very important to William and there is always someone who will oblige. He also loves being tickled on his back which can reduce him to giggles!

One of his favourite places at Ty Hafan is the multisensory room where he can listen to music whilst having a massage to relieve any pain in his hips caused by spending long periods of time in his wheelchair.

William is partially-sighted, but in the multisensory room he can see the colour changing bubble tubes and fibre optic strands when held near his face. For the same reason he loves to feel the warmth of the sunshine on his face.

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william's storyHe also loves the hydrotherapy pool, which is warm and relaxing and helps William's movement because his weight is supported.

Such is Zena’s confidence in Ty Hafan, she is now able to go on holiday knowing that William is being very well cared for.

Have you ever wondered what Ty Hafan looks like? Or maybe you’ve always wanted to come for a look around but you’re a little apprehensive?

This is completely understandable and one of the reasons why we’ve created an online virtual tour.

Whilst there is nothing quite like visiting the hospice for real and seeing firsthand the smiles and laughter, warmth and love that fill this wonderful place, the online virtual tour is a great way for you to see what has been called by many families a 'lifeline' and a 'home from home'.

You can wander through the colourful rooms, beautiful gardens and see how the hydrotherapy pool and multisensory room bring joy and comfort to so many.

"We are extremely proud of the virtual tour" said Jayne Saunders, Director of Care at Ty Hafan.

"Whilst we love to show visitors around the hospice itself, the website facility is the next best thing to being able to share this amazing place with families who might be considering our services, healthcare professionals who may wish to refer children as well as those who so generously fundraise on our behalf."

To take a memorable 'trip' around Ty Hafan, visit www.tyhafan.org and click on

take a tour...

providing care, being there8

hospice tour

www.tyhafan.org 9

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derek makes a splash!Despite a frosty morning in January, BBC weatherman Derek Brockway was given a warm welcome by all at Ty Hafan when he visited the hospice to present a cheque for £750.

Derek teamed up with illustrator Suzanne Carpenter to raise money for us through sales of their children’s books, which feature loveable characters Duck and Starfish, who become friends during a day at the seaside.

They also presented Ty Hafan with framed prints of the artwork that appeared in the book and signed copies of the books for the children to enjoy.

Derek read the story to the group of children staying at the hospice and shared a joke or two with parents and staff along the way.

providing care, being there

Asked why he chose to support Ty Hafan, Derek said "Being a Barry boy, Ty Hafan is a local charity whose work I’ve always admired. I’ve wanted to raise money for them for a while, and doing so through the sales of my children’s books felt like the perfect way."

Illustrator Suzanne Carpenter commented "I’ve been aware of the fantastic work done by Ty Hafan for some time, so when Derek suggested that we support them through sales of the books, I was more than happy to

agree. Fingers crossed, Derek’s involvement with the charity will inspire other people to raise money for them too."

Derek’s children’s books "Duck and Starfish Make a Splash" and "Sblash! gyda Fflap a Seren" are available to buy from all good book shops and online retailers.

A percentage of the income received from the sale of each book will be donated to Ty Hafan.

11www.tyhafan.org

providing care, being there12

cwtch corner

13for your welsh copy please visit www.tyhafan.org/lets-cwtch

providing care, being there14

'ome from 'omeAt just two weeks old, we were told our son Bradley would not live very long and he was unlikely to reach the age of one due to a very rare chromosome disorder.

We remember his first laugh at a few months old when travelling in the car and the sun was flashing through the branches of the trees.

We celebrated a birthday with each new month believing that we would never be able to celebrate an annual one.

Although we all loved Bradley very much there were obvious difficulties arising as a result of the variety of medical and health issues that Bradley had and the needs of our healthy children.

Bradley required someone in his room whilst he slept at night as he would stop breathing. This led to very

disturbed sleep patterns for us and regular hospital admissions in

the first year of his life.

It was whilst staying at Withybush hospital one night with Bradley and talking to someone about the lack of time we had to spend with our other children, along with the stress we felt created by tiredness, that Ty Hafan was mentioned.

We were very unsure about this, as we pictured another hospital-like institution and the very life we were trying to avoid for Bradley. But we knew it was very important to spend some quality time with the other children so allowed the family to be referred.

We enjoyed an amazing weekend at Ty Hafan although the staff did not get too many cuddles with our gorgeous Brad, because we were not confident to go away too far. But with every visit Bradley began to recognise and enjoy meeting his link workers and any member of staff who had the same energetic thrill for life as he had.

We were always welcome to stay in the family rooms upstairs and soon came to look forward to our breaks, confidently leaving Brad to have a jolly good time on outings, Jacuzzi times, massages, soft play, sensory

room and music room sessions, cookery club and so many lovely activities.

We were able to go to the cinema, bowling or shopping during the day and return knowing by Bradley’s face that he had also enjoyed himself doing great activities too.

We were blessed with nearly ten years of fun, love and mischief with our son.

In September 2009 Bradley suffered a seizure from which he was sadly unable to recover. We were so relieved to be able to bring him home from the intensive care unit in the Heath hospital in Cardiff to Ty Hafan. He was aware that he had returned to the familiar friends and surroundings and relaxed.

We were able to stay with him throughout those last days with many friends and family joining us to say their goodbyes.

The wonderful care and comfort the staff gave us was more than we had ever imagined would be possible. So many of you loved him and we would like to thank you all. From that initial referral to his passing was a journey that was so perfectly supported by you.

I will always remember the day that Bradley and I pulled up outside the front door for a visit. We had come straight from school on a Friday evening. He looked out of the window, smiled and said "ome".

He was a boy of few words but that said it all – he felt at home and so did we.

Providing care, being there for Teresa, Mike, Rhiannon, Scott, Melinda, Jason, Joshua, Toby and Max

You can count on my support.

(Please use BLOCK CAPITALS) Title ................ Forename ...................................................................................

Surname ................................................................................... Date of birth ..........................................................

Full Address .......................................................................................................................................................

........................................................................................... Post Code ...............................................................

Tel ..................................................................................... Mobile ....................................................................

Email ..................................................................................................................................................................

Help Ty Hafan save money on postage – join our email list!

Here’s my regular gift of:

n £10 monthly n £15 monthly n Other Please state amount £ ............................................. monthly

Please fill out your Direct Debit mandate below and don't forget to tick the gift aid box!

Instruction to your Bank or Building Society to pay by Direct Debit

Name and full postal address of your Bank or Building Society

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Branch Sort Code

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2 4 9 5 0 0

Reference Number

Instruction to your Bank or Building Society

Please 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.

To the Manager Bank/Building Society

Address

Post Code

Signature(s)

Date

Banks and Building Societies may not accept Direct Debit Instructions for some type of accounts

Please fill in the form and send to Ty Hafan, Head Office, St Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff CF5 6ES

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2

I can’t commit to a regular gift, but would like to make a donation:

Please accept a cheque / CAF voucher for £ ……………………………………… payable to Ty Hafan

Please accept my credit / debit card donation:

Debit my MasterCard Visa Debit Card for the sum of £ ...........................................................

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................................................................................................... Post Code ...........................................................................

Card No …………………….…………………………………………………………………..………….....................

Debit Card Issue No …..…... Issue Date ............/.............. Expiry Date ............/.............. Security No: ....................

Signature ............................................................................................................. Date ...................................................... Increase your donation with the Gift Aid Scheme

n I am a UK taxpayer and I would like Ty Hafan to reclaim the tax on my donation through the Gift Aid Scheme (an extra 28p 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.

Please send me further information on:

Ty Hafan events Crackerjackpot Leaving a gift in my will How my company can support Ty Hafan Becoming a volunteer Starting or joining a “Friends of Ty Hafan” group Fundraising

Other – please specify ................................................................................................................................

Please return this form to: Ty Hafan, Head Office, St Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff, CF5 6ES

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.

I do not wish to be contacted by: email telephone post

For office use only ......................... 024181 (cwtch-mar10)

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

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 Ty Hafan and will be spent for the benefit of the children, young people and families using our care services. Rest assured that every gift will continue our care provision programme and assist in making the lives of the children and young people as comfortable and enjoyable as possible.

£50 a day keeps all things electrical powered at the hospice, like the hoists

Over £2,500 per month pays for some of the important therapies that the children

receive including music and physio

where does your money go?

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 Ty Hafan and will be spent for the benefit of the children, young people and families using our care services. Rest assured that every gift will continue our care provision programme and assist in making the lives of the children and young people as comfortable and enjoyable as possible.

To keep the hospice warm and cosy it costs £10 for our daily water supply

and £25 a day for our gas supply!£105 a day keeps the hospice

clean and germ free!

£850 a week keeps all the tummies fed at the hospice

Our lotions, potions and disposables cost £46,000 a year!

where does your money go?

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captain jack visits ty hafan!Time traveller Captain Jack Harkness, aka John Barrowman, popped in a few weeks ago to mark the end of our tenth birthday celebrations by helping to place a time capsule within our grounds.

The Torchwood and Dr Who star has chosen to support Ty Hafan and encourages his fans to make donations through his website - www.johnbarrowman.com. Along with his family, he also appeared on All Star Family Fortunes to raise money for us.

Many of the families, children and staff are fans of John and were there to meet him on the day. Victoria, one of the children who regularly uses Ty Hafan, came in especially to meet John and they struck up an instant friendship. She spent a magical hour giving him a tour of the hospice and made sure she gave John a big hug

and kiss before he left!

Robert Lewis, Chairman of Trustees, said "It was very good of John to pop in and help us place the time capsule. His support has been invaluable over the past few months, helping to raise awareness of our care programme and generate the necessary funds so our services can continue to be provided free of charge to hundreds of life-limited children, young people and their families across Wales.

"Ty Hafan’s services have developed quickly over the ten years we have been open and we were anxious to record all the important events that have

www.tyhafan.org 21

happened during that time as well as give a 'snapshot' of how Ty Hafan is today.

"The time capsule will be opened on our 25th anniversary. The information and objects it contains covers all aspects of Ty Hafan, including

our care services and fundraising activities which I am sure will provide an interesting insight into how we started and have developed in the first ten years."

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Dress up or dress down and give a pound to help hundreds of young lives.

The children and young people who visit Ty Hafan love to dress up and have fun whilst making the most of every precious moment they have

left with their families. By taking part in dress up or down for a pound on Friday 30 April, you and your friends, school, group, club or workplace will ensure that these families get the support they so desperately need, completely free of charge.

dress up or down for a pound!

..... pyjamas to work... colour themes... jeans to school... ballgown to bingo... fun hats... fancy dress... crazy hair... tiaras... fairy wings to nursery... black tie... odd socks...

friday 30 april 2010

To register go to www.dressupordownforapound.co.uk and download your fundraising pack.

Alternatively, please contact Gaynor Taylor by email askfundraising@tyhafan.org or on 029 2067 2095.

www.tyhafan.org 23

..... pyjamas to work... colour themes... jeans to school... ballgown to bingo... fun hats... fancy dress... crazy hair... tiaras... fairy wings to nursery... black tie... odd socks...

friday 30 april 2010

we're more than a buildingDuring the past 11 years, a tremendous amount of work has been done to develop Ty Hafan’s services for families and children.

Originally, Ty Hafan was just a bright and beautiful building where life-limited children, young people and their families could go for comfort, care and support.

Now, it has become a whole philosophy of care which extends right across Wales and into the very homes of families who have been referred to its services.

When the hospice first opened its doors in 1999, there was one member of staff who provided a limited support service for families between stays at the hospice, as well as bereavement counselling for those whose children

had died.

Now there are five family support staff, each looking after large numbers of families from across Wales. Support can take the form of helping the family access other community services or specialist equipment to help them to look after a profoundly disabled child, liaising with the child’s school or just being a shoulder to cry on when the going gets tough.

Siblings are supported as much as their parents as they often feel left out when there is a life-limited brother or sister getting a lot of attention. That support is most important at the time of bereavement and the family’s Support Practitioner will continue to visit the family for as long as it is needed after their child has died.

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we're more than a buildingPlay 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. A qualified Outreach Play Practitioner travels to the family home between stays at the hospice to help make full use of any equipment recommended.

Music plays an important part in alleviating the child's stress and frustration. A trained music therapist attends the hospice once a week, helping children and young people make music.

The latest technology allows children and

young people to make

music with just the faintest

flutter of an eyelid. Again this service can be provided within the family home.

Mums’ groups have been formed in Cardiff, Swansea and west Wales to provide an opportunity for mums to meet up with others who find themselves in similar situations.

Likewise, the dads’ group gets together to have a good game of football to help alleviate family stresses.

Aromatherapy and relaxation treatments such as physiotherapy and massage are provided at the hospice and in the family home. These treatments can control pain and physical discomfort and can be extended to other family members to alleviate the stress and worry of looking after a life-limited child 24 hours a day.

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

providing care, being there26

We are constantly striving to keep you in the 'loop' and Facebook and Twitter allow us to do this at very little cost.

Ty Hafan’s online community has taken off over the past few months with over 3,000 followers on Facebook and nearly 250 followers on Twitter.

You can instantly become a part of the Ty Hafan Facebook community and see what everyone, including families who visit Ty Hafan, have to say. Also, at a click of a button you can befriend our twitter chick for a bird's eye view of all the latest news and events. You can even keep a watchful eye on Ty Hafan's famous friends and see how they're showing their support!

So if you’d like to stay updated on our events, celeb visits, videos and the latest news from Ty Hafan, join today...

www.tyhafan.org/join

facebook and twitter

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it's that simple!You could make a real difference to the families and children who rely on Ty Hafan and it won't cost you a penny...

join our email list!

By visiting www.tyhafan.org/join you can become part of our email group. Emails are a much cheaper way for us to keep in touch with our supporters.

We promise not to bombard your inbox; just send you all the best news, latest events and inspiring videos.

All we need is your email address... it's that simple!

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

providing care, being there28

Rosie said "It will be very difficult. I know I will be very slow and it will be harder because I am pulling Icebird - my lightweight trailer. I am not superwoman; I am just an ordinary runner, but it is wonderful to be doing my first marathon in Tenby and I will just go on from there."

Rosie continued: "I was very moved when I visited Ty Hafan recently and hope that I can raise lots of money for such a worthwhile cause.

"I am so grateful to everyone who has agreed to have sponsor forms and those who have sponsored me already."

Anyone who would like to sponsor Rosie can do so by visiting... www.justgiving.com/rosie_swale_pope Photograph by Martin Caveney

26 marathons in 26 days!Running one marathon is unthinkable for most people. A gruelling 26 miles that will test your physical and mental capabilities to the limit.

Just think for a moment about running 26 miles in one day. Now try to imagine running another 26 miles the following day. And then another marathon the day after that. In fact, try to imagine running 26 marathons in 26 days. Seems impossible doesn’t it?

Not for 63 year old Rosie Swale Pope MBE.

Tenby-born Rosie recently ran around the world for charity and now plans to run 26 marathons in 26 days for Ty Hafan.

The first marathon on her epic 681.2 mile journey will be in her very own home town as she launches Tenby’s new Wales Marathon. Rosie’s other 25 marathons will all be

in Wales and England.

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"Cheryl and I thought we were on a shopping extravaganza; we’ve been trudging uphill for three days now with credit cards at the ready and not a sniff of a shop!" Cerys Griffiths

"We are still laughing and talking constantly - in fact Cerys is our pit canary - when she stops talking we need to start worrying about altitude! So everyone is in peak health ready for tomorrow when we walk for three hours in the morning, then leave at midnight for the summit." Jacquie Williams

"We walked for 14 hours and the descent was nearly as challenging as the ascent! All exhausted tonight; walked two hours to campsite, have final seven hour descent tomorrow. What an adventure!" Jacquie Williams

we made it!Regular Cwtch readers will remember that 14 tenacious women from south Wales attempted to climb the mighty Mount Kilimanjaro in January for Ty Hafan.

Well, they have done it! And more astonishingly, they raised £50,000 for Ty Hafan in the process!

On Saturday 30 January 2010, Welsh Women Walking Kilimanjaro made it to the summit of the challenging mountain. Here are a few comments the ladies made during the climb...

"Had magical day today - we climbed the 200m vertical Baranco Wall - everyone seems to think this is scary but the team loved it, and we even did some impromptu rock climbing afterwards. We were having so much fun!" Jacquie Williams

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a mum's storyHelen from Bridgend can’t remember what it’s like to go to bed and look forward to a full night’s sleep. That only usually happens when her seven year old son Matthew goes to Ty Hafan.

Matthew was born prematurely at 32 weeks and spent the first eleven months of his life in hospital. He has cerebral palsy and chronic lung disease and has been spending time at Ty Hafan since he was four.

Although Matthew is not able to walk he likes to be very active and loves to move around the floor by pushing with his feet. He is a very determined little boy who tries to do many things that sadly his body won’t allow him to do.In order to make sure he doesn’t injure himself in the process he needs someone with him constantly.

He also loves to move around his bed and has a specially-adapted cocoon

to keep him safe at

night although he has to be quite closely monitored as he has been known to throw himself out of it.

"Matthew is a very special, happy and contented child but he does need to be watched at all times” said Helen who is the main provider of the high level of care that he needs.

"Although he does go off to sleep at night I am aware that he could wake at any time so I suppose I always have half an ear open listening in case he needs me.

"When he goes to Ty Hafan I get the chance to have a good night’s rest knowing that someone will be sitting with him and making sure he is OK."

providing care, being there

midnight sleep walkfriday 30 april 2010millennium stadium, cardiffladies sleep walk . men marshal

Give up a night’s sleep and help Mums of life-limited children get some well-earned rest. Read more and register today...

www.midnightsleepwalk.co.uk

Supported by...

www.tyhafan.org Ty 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. Ty Hafan® is a registered trade mark. (mar10)

thank you for helping me and my brother love Lewys xxx