cwtch
Newsletter: Autumn/Winter 2009 Inside... • Lee - you're a star! • Santas on the Run • A cracking way to help!
welcome... to the autumn / winter edition of Cwtch. With the nights drawing in and festive cheer just around the corner, I have a ‘Cwtchy’ suggestion for you! Pour a glass of mulled wine, grab a mince pie and this copy of Cwtch and curl up on the sofa to see how people like you are helping hundreds of lifelimited children, young people and their families from Wales.
We’ve had a busy few months welcoming new children and their families to our services and providing 24 hour care and support to them, both at the hospice and in the family home.
2
providing care, being there
We are also extremely delighted that a few young people against all the odds have outgrown our services and are moving on to fulfil their dreams and ambitions. Families and children have been busy enjoying themselves since the last issue of Cwtch. From taking advantage of the new trampoline in the grounds of the hospice, being made a fuss over at one of our pamper nights and even taking a trip to Silverstone Racetrack, there have been smiles all around!
You have also been very busy over the past few months raising much needed funds so the families and children can enjoy the little time they have left together. Whether you conquered the mighty 55 mile Taff Trail Cycle Challenge or were mesmerised by the delightful singing and song-writing legend Cerys Matthews at our Cardiff Butterfly Ball, the families and children thank you.
We’ve also been busy celebrating the final stages of our 10th anniversary, which is shortly due to culminate in hundreds of Birthday Bash parties across Wales.
What a great year it has been and with your continued support, I know we can be there for the families and their children for at least another ten years. Jane Johnson Care Team Leader
www.tyhafan.org
3
christopher's story Christopher is a handsome young man with a charming smile. From Neyland in Pembrokeshire, Chris turned 19 on 18 October this year. Despite a normal birth at a healthy weight, he experienced feeding difficulties and after a couple of months he was diagnosed with cerebral palsy and hydrocephalus. At five months he underwent surgery to have a shunt inserted to drain the excess fluid in his brain. Despite being severely disabled, Chris has lived his life to the full with the loving care and support from his mum Julie and dad Alan. He has been able to attend mainstream school receiving one-to-one tuition, resulting in Chris being very good at maths and science.
4
providing care, being there
In February 2007, Chris went into hospital for surgery on his hip to make him more comfortable. It was expected to be a straightforward procedure but afterwards he suffered septic shock and renal failure and was transferred to the University of Wales for peritoneal dialysis. He also had seizures and breathing problems and began to deteriorate very quickly. In fact, he was so poorly that his family agreed that Chris should be given no further treatment and he was referred to Tyˆ Hafan for end-of-life care. But Chris hadn’t given up the fight. Within a few days he began to rally and eventually he was able to leave
Tyˆ Hafan and go home with his mum and dad. Since that time, Chris and his family have been back to stay at the hospice numerous times for the occasional short break. Having just celebrated his 19th birthday, Chris recently came to Tyˆ Hafan for his last visit. Although Chris is now too old to stay at the hospice, he will continue to receive support from our Family Support team.
“Chris always enjoyed his stays at Tyˆ Hafan” said Julie. “He had great fun there and we always had a lovely welcome. We’re all very grateful for what Tyˆ Hafan has done for our family and it’s comforting to know we have a dedicated Family Support practioner to help us even though we will no longer be coming to the hospice.”
www.tyhafan.org
5
volunteer at one of our shops! We are always looking for new volunteers to help in our shops!
Our Shop Locations
It doesn’t matter whether you’re 14 or 75, volunteering at a Tyˆ Hafan shop is great fun and a good way to make new friends.
Aberdare 6 Cardiff Street, CF44 7DP 01685 871800
You can work a couple of hours a week or even full time! And the number of different jobs available is amazing, with people needed to sort and prepare stock, serve customers and distribute leaflets in the local area. Don’t miss out on the fun and the sense of pride knowing you’re doing something wonderful. Become a shop volunteer today! Contact your local shop manager for more details.
Tyˆ Hafan currently has 15 shops across South Wales. These are:
Barry 2 High Street, CF62 7DZ 01446 747872 Blackwood 113 High Street, NP12 1AD 01495 229090 Caerphilly Bluebell, Market Street, CF83 1NX 029 2088 1034 Cardiff 62 Albany Road, CF24 3RR 029 2049 1367 Cardigan 1 Pendre, SA43 1JL 01239 621825
6
providing care, being there
Cwmbran 5 General Rees Square, NP44 1AH 01633 862122
Pontypridd 33a Taff Street, CF37 4TR 01443 406959
Lampeter High Street, SA48 7BG 01570 421976
Porth 38 Hannah Street, CF39 9RB 01443 683937
Maesteg 139 Commercial Street, CF34 9DF 01656 810444
Talbot Green 2 Ely Valley Road, CF72 8AP 01443 231481
Morriston 5 Woodfield Street, SA6 8AQ 01792 702394
Treorchy 83 Bute Street, CF42 6AH 01443 774850
Newport 90 Chepstow Road, Maindee, NP19 8EE 01633 253470
www.tyhafan.org
7
newsroom Lee - you're a star! Tyˆ Hafan is pleased to announce that British Lion and Wales rugby star Lee Byrne has become an Ambassador for us. Lee, who currently plays his club rugby for the Ospreys, visited the hospice along with his team mates back in May of this year. He was so moved by the hospice, its staff and more importantly, the families and children staying there, that he couldn’t wait to help! “I’m very proud to be associated with such a great charity” says Lee. “When I first visited the hospice, it was not what I expected at all. In fact, it was totally the opposite. The hospice building itself was bright, welcoming and relaxing, and the children and their families, who are obviously going through unimaginable situations, looked at home and happy there.
8
providing care, being there
"I’m really excited about helping the families and children in any way that I can. Whether it’s raising Tyˆ Hafan’s profile, getting more people to attend an event or even spending some time just chilling out with a family, I look forward to doing what I can.” I’m sure you’ll agree it’s fantastic news that this sporting legend has offered to help.
From everyone at Tyˆ Hafan... thanks Lee!
Taff Trail success The Taff Trail Cycle Challenge has become increasingly popular every year. A record number of cyclists took part in 2009’s Challenge, held on Sunday 6 September. All 75 team spaces for the 55 mile Full Taff were taken months before the event, and it was the same story for our 28 mile Half Taff starting from Rhydycar Leisure Centre (another 30 team spaces). In all, some 420 individuals took part in the Challenge and will raise up to £40,000 in sponsorship for the children and families supported by Tyˆ Hafan. International law firm Eversheds has been the corporate sponsor for this event since it started in 2003 and their continued support means most if not all the money raised can go straight towards providing care.
“This is very much a partnership with Tyˆ Hafan and our staff have enjoyed supporting the event as marshals and teams” commented Stean Davies from Eversheds. “We have been very impressed by the way Tyˆ Hafan has worked to establish the Taff Trail Challenge as a firm favourite on the Welsh cycling calendar with over 100 teams registered this year.” There are 27 teams who have already expressed an interest in next year’s event, so if you want to be part of Wales’ biggest and best charity cycling event, register your interest now by calling Alan Drury on 029 2067 2067 email alan@tyhafan.org or visit www.tyhafan.org
9
tyˆ hafan christmas cards ...available now! Included in our great range this year are four superb designs: Peacock in the Snow, Christmas Carols, Santa's Stop and The Christmas Tree. To view our exciting range of Christmas Cards, and to order and pay online, please visit www.tyhafan.org/christmascards If online isn’t your thing, you can call 01446 721544 or email christmascards@tyhafan.org and we’ll happily send you our Christmas Cards brochure.
10
providing care, being there
Alternatively, pop into your local Tyˆ Hafan shop (check out page six for our shop locations). Cards are selling very well and the most popular lines are selling out so to avoid disappointment, order now!
Your valuable support will help hundreds of life-limited children, young people and their families enjoy what could be their last Christmas together.
pac k of t e chris t mas n ca r d on ly s ÂŁ2.9 9!
www.tyhafan.org
11
card
cwtch corner
12
providing care, being there
ver
1 - co
for your welsh copy please visit www.tyhafan.org/lets-cwtch
13
rhys' story Eleven year old Rhys, from Bridgend, was just one of the stars of Tyˆ Hafan who helped us launch our Birthday Bash campaign this year. Despite being diagnosed with Duchenne Muscular Dystrophy at the age of four, Rhys has a sunny nature, a gorgeous smile and when he comes to stay at Tyˆ Hafan is generally known as the “little cheeky chappie”! Like any child of his age, he enjoys his sessions on the Playstation and watching rugby, but his real passion is Formula One and he treasures the memory of meeting his hero Jensen Button.
14
providing care, being there
Rhys had his first stay at Tyˆ Hafan a couple of years ago, when his condition began to deteriorate and getting around became more difficult for him. “Rhys loves to stay at Tyˆ Hafan and never wants to come home” said his mum Diane. “Especially if he knows his mate Kyle is going to be there as well. Those two monkeys together are double trouble! I think he feels like a normal child when he is there as the boys are all the same as him.
“We let him go to Tyˆ Hafan on his own as he doesn’t want mum and dad there! It also allows us to spend more time with his younger brother Owain.” Fortunately, up until now, Rhys has been able to enjoy main stream school, spending his primary years at Brackla Junior where he was able to take part in PE and he really enjoyed his art lessons.
More recently however, he has found coming to terms with his condition difficult as his classmates are moving on in their development and he sometimes feels a bit left behind.
Rhys has definitely lived his life to the full so far and everyone at Tyˆ Hafan wishes him well now he is attending “big school”!
www.tyhafan.org
15
1
You can count on my support. (Please use BLOCK CAPITALS)
Title ................ Forename ...................................................................................
Surname ................................................................................... Date of birth . ......................................................... Full Address........................................................................................................................................................ ........................................................................................... Post Code................................................................ Tel ...................................................................................... Mobile..................................................................... Email...................................................................................................................................................................
Help Tyˆ Hafan save money on postage – join our email list!
2
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 Please fill in the form and send to Tyˆ Hafan, Head Office, St Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff CF5 6ES
Name and full postal address of your Bank or Building Society To the Manager
Bank/Building Society
Originator’s Identification Number
2
4
9
5
0
0
Reference Number
Address
Instruction to your Bank or Building Society
Post Code
Name(s) of Account Holder(s)
Please pay Tyˆ Hafan Direct Debits from the account detailed in this instruction subject to the safeguards assured by the Direct Debit Guarantee. I understand that this instruction may remain with Tyˆ Hafan and if so, details will be passed electronically to my Bank/Building Society. Signature(s)
Bank/Building Society account number
Branch Sort Code
Date
Banks and Building Societies may not accept Direct Debit Instructions for some type of accounts
3
I can’t commit to a regular gift, but would like to make a donation:
Please accept a cheque / CAF voucher for £ ……………………………………… payable to Tyˆ Hafan Please accept my credit / debit card donation: Debit my MasterCard
Visa
Debit Card
for the sum of £............................................................
Cardholder’s Name .............................................................................................................................................................. Address (if different) .................................................................................................................................................................... ................................................................................................... Post Code ........................................................................... Card No …………………….…………………………………………………………………..…………..................... Debit Card Issue No …..…... Issue Date ............/.............. Expiry Date ............/.............. Security No: .................... (if applicable)
(last three digits on reverse of card)
Signature ............................................................................................................. Date ......................................................
4
Increase your donation with the Gift Aid Scheme
n I am a UK taxpayer and I would like Tyˆ 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 Tyˆ Hafan in the past six 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: Tyˆ Hafan events Crackerjackpot Leaving a gift in my will How my company can support Tyˆ Hafan Becoming a volunteer Starting or joining a “Friends of Tyˆ Hafan” group Fundraising Other – please specify.................................................................................................................................
Please return this form to: Tyˆ Hafan, Head Office, St Hilary Court, Copthorne Way, Cardiff, CF5 6ES
Tyˆ 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 Tyˆ 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
For office use only ......................... 024175 (cwtch-nov09)
post
where does your money go?
ÂŁ50 a day keeps all things electrical powered at the hospice, like the hoists
Over ÂŁ2,500 per month pays for some of the important therapies that the children receive including music and physio
Whilst we try hard to ensure your payment will go to the area of support that you have chosen, Any over-subscription or surplus from your gift, after all costs of your chosen area of support the benefit of the children, young people and families using our care services. Rest assured the children and young people as comfortable and enjoyable as possible.
£105 a day keeps the hospice clean and germ free!
To keep the hospice warm and cosy it costs £10 for our daily water supply and £25 a day for our gas supply!
Our lotions, potions and disposables cost £46,000 a year!
£850 a week keeps all the tummies fed at the hospice
, we may not always be able to allocate funds in this way due to over-subscription or demand. have been met, will be used for the charitable purposes of Tyˆ Hafan and will be spent for d that every gift will continue our care provision programme and assist in making the lives of
newsroom Pamper Evening Last July, Angela Tucker and her team of volunteer therapists travelled to Swansea to pamper and make a well-deserved fuss of a group of 20 Tyˆ Hafan mums and one or two supportive friends. The daylong session comprised of Indian head massages, back massages, reflexology and manicures. One of the first to arrive was bereaved mum, Samantha Thomas from Pontardawe, who tragically lost two of her young children within a year of each other.
20
Angela explained “We try to make these days and evenings very special for the mums who come along, not only for the treatments but also the opportunity to just be amongst others who understand what they are going through. Of course, there is also a lot of fun and a chance for them to let off a bit of steam. Members of the Family Support team are also around to offer help and advice. “The treatments are always available to the children and all members of the family during their short breaks at the hospice, but I also occasionally visit the children in their homes or in hospital during lengthy stays. Likewise, I can treat mums and dads after many hours spent at a bedside.”
A cracking way to help! Lee Byrne, Wales rugby star and ambassador for Tyˆ Hafan, was at the hospice for the launch of Crackjackpot, a cracking revitalised name for the Tyˆ Hafan Lottery. To date, the lottery has raised over £14 million for the children and families in our care. “It was great to be involved with the Tyˆ Hafan Crackerjackpot launch" said Lee. "I am sure it will encourage more people to join helping to secure a more consistent income for this great charity hospice.” Tyˆ Hafan’s Crackerjackpot Manager, David Griffiths, said “In response to our members, we have decided to refresh our lottery with a new name, look and to rearrange the weekly prize pool of £3,000 to provide an opportunity for a bigger prize and for more winners.” To help launch with a bang, Welsh and British fireworks champions Pendragon Fireworks very kindly put on an amazing display in the hospice grounds, worth over £10,000.
“We were very proud and pleased to be able to share our 10th anniversary with such a wonderful charity” said Jon Mellen from Pendragon. With 81 guaranteed weekly prizes, including a £2,000 top prize plus a rollover jackpot of up to £12,000 and your win being 30,000 times more likely than the National Lottery, what are you waiting for? You can play, or renew, your subscription to Crackerjackpot online at www.crackerjackpot.co.uk or by calling 029 2067 2062. It's easy to play Crackerjackpot online. Simply pay via credit or debit card or for continuous play, download a direct debit mandate to pay through your bank.
we're always on the look out! Our shops are always on the lookout for good quality items to sell. If you’ve got items that you no longer need and they’re in good condition, we would love you to donate them to us! Combining new quality donated items with weekly stock rotations means some of the best value for money shopping to be had, anywhere!
What’s more, now you can ‘Gift Aid’ your donated items at any of our shops. By simply ticking a box, you are adding another 28% to the value of your donation.
22
providing care, being there
eBay Did you know you can buy Tyˆ Hafan stock on eBay? Items for sale have ranged from a brand new HP laptop to a number of Beatles albums. Search for Tyˆ Hafan on eBay! You can also donate money to Tyˆ Hafan when you sell items on eBay. Please check it out today. You can help make a difference to families using our care services.
Full of bargains!
What a find!
Whenever you set foot into a Tyˆ Hafan charity shop, you are never more than a foot away from a belter of a bargain!
The warehouse had an amazing find recently. A lamp base was about to be thrown away. However, eagle-eyed Barbara Hoskins, Cwmbran's Shop Manager, noticed something different about it.
‘End of line’ stock from big names such as Marks and Spencer and Next are hugely popular. With great items ranging from M&S handbags to Next house furnishings, you’ll definitely walk away with a bargain! Plans are in hand to buy in some big name Christmas gift lines for this year. Please visit your local shop!
She took a picture and sent the photo to a local auctioneer. They became very excited and have now sent it to an auction in London where it is expected to fetch between £3,000 and £5,000!
for your welsh copy please visit www.tyhafan.org/lets-cwtch
23
santas on the run Would-be Santas are once again invited to join in this year’s festive fundraisers! Following the huge success of Tyˆ Hafan’s first ever Santa Run last year, there are now three Santa Runs to choose from: M48 Severn Bridge Sunday 6 December, 11.00am Bridgend Town Centre Saturday 12 December, 5.30pm Ffos Las Racecourse Monday 21 December, 12noon
These events are guaranteed to be full of fun for everyone and are sure to get you well and truly into the festive spirit!
24
providing care, being there
Our Santa Runs are open to families, individuals and groups of friends or work colleagues, and this is your chance to give the best possible present you can this year by helping to make a world of difference to the life-limited children, young people and their families who rely on Tyˆ Hafan for comfort, care and support. The events are sponsored by Foresters and Western Power Distribution, and Brecon Carreg have kindly donated bottled water.
All entrants will receive a free Santa suit to run in on the day, and anyone raising over £35 in sponsorship will receive a free ‘Santas on the Run’ commemorative souvenir.
For further information or to book your place at one of these festive fundraisers, please contact Alan Drury on 029 2067 2067 or email alan@tyhafan.org
Entry costs £7.50 for adults, £5 for children (under 16) and £20 for a family of four.
Places are going very quickly and we’re limited to 500 Santas per event, so send your entry in soon to ensure you don’t miss out on the fun.
www.tyhafan.org
25
what a fantastic evening! Fans of the legendary Cerys Matthews were treated to the rare opportunity to hear the Welsh singer when she performed at the Tyˆ Hafan Butterfly Ball on Friday 18 September at the new Cardiff City Stadium.
Accompanied only by her guitarist, Cerys charmed guests with her distinctive voice and repertoire which combines her musical experiences and influences of the last few years. The evening was hosted by accomplished broadcaster Siân Lloyd and began with a champagne reception followed by a sumptuous four course dinner and fabulous entertainment.
26
providing care, being there
To add to the support from these wellknown Welsh ladies, international star Katherine Jenkins also sent her best wishes for the success of the evening: “Tyˆ Hafan has done such wonderful work supporting life-limited children, young people and their parents over the past ten years, and I know I am not alone in admiring the staff and carers for their unfailing dedication and devotion.”
Our special supporters yet again donated some exceptional auction and prize draw opportunities which included a chance to ‘meet & greet’ Tom Jones, ‘meet & greet’ Rob Brydon, Joe Calzaghe’s signed glove and Shane Williams’ boots. The auction and prize draw raised a remarkable £17,000.
You helped to make this an evening to remember and hundreds of life-limited children, young people and their families thank you for attending and giving so unselfishly on the night. You have, and will, make a world of difference to their lives.
www.tyhafan.org
27
a wheely good result There was great excitement at the hospice this year when staff heard the good news that two of the young people who have spent time with us over the years had passed their driving tests. Adam from Cwmbran has been a frequent visitor to Tyˆ Hafan since it first opened in 1999. He was diagnosed at birth with Freeman Sheldon Syndrome which when he was young, meant that he needed oxygen 24 hours a day.
28
providing care, being there
Since that time, due to the amazing care given to him by his family, with support from Tyˆ Hafan, Adam has grown up to be the typical teenager. Adam passed his driving test earlier this year and one of his first ports of call was the hospice to show off his car and driving skills to the care staff.
Having turned 19 in October, Adam recently came for his last stay at Tyˆ Hafan – in his own “wheels” naturally!
Danielle from Port Talbot also passed her driving test a couple of months ago and again was very proud to drive down to the hospice to impress the care staff. She was born with complex congenital heart disease and underwent major surgery at the age of four months old and then three years later to correct a number of other major heart problems.
Although her heart structure is now normal, the right side does not function as well as it should which means Danielle tires easily and can become more breathless than other young people of her age.
However, that hasn’t stopped her being accepted at hairdressing college to which of course she can now drive herself!
for your welsh copy please visit www.tyhafan.org/lets-cwtch
29
welsh women walking 14 inspirational women A challenge of nearly 20,000 feet A target of £100,000! In January 2010, 14 Welsh businesswomen will climb the mighty Kilimanjaro. This group of truly inspirational women are ditching their heels and donning walking boots to raise £100,000 to share between Tyˆ Hafan and Breast Cancer Care Cymru. Not only are they aiming to raise a substantial amount of money for both charities, but they also want to use the gruelling climb to highlight what ‘everyday’ women can achieve by simply setting their mind to it and working together as a team. The group, called Welsh Women Walking, recently secured a fantastic sponsorship deal with Boehringer-Ingelheim who have
30
providing care, being there
developed a natural food supplement called Antistax which prevents aching, heavy tired legs – the sponsorship and the product are both very much welcomed by the ladies! Affectionately nicknamed Welsh Women Talking because of the amount of chatting that goes on whilst walking, the group get together on the first Sunday of every month for a ‘chatty walk’. They charge £10 per walk and all proceeds go to their nominated charities. It was on one of these walks a few months ago that the Kilimanjaro idea came together. If you would like to join their monthly walks, or are interested in sponsoring Welsh Women Walking and their mighty Kilimanjaro trek, please email Jacquie at kili@scsaftercare.co.uk.
10 years of caring for children 10 days to make a difference 10 days to make a Will for just £10
write a Will for only £10
Tyˆ Hafan has teamed up with a number of solicitors across South Wales to offer you the chance of having a Will written for just £10.
Call us on the number below for a qualified solicitor in your area participating in this offer. Make an appointment and they will prepare your Will for a fraction of the normal cost. But hurry... this offer is only valid for 10 days so take advantage now!
Call our Legacy Team on 029 2067 2060 or visit www.tyhafan.org
Registered Charity No: 1047912. St. Hilary Court, Copthorne Way, Culverhouse Cross, Cardiff CF5 6ES Tel: 029 2067 2060 Fax: 029 2067 2061
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. (nov09)