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RAINBO

W TRUS T

MAGAZ

INE

Winter 2014

ALL

CHANGE! Introducing our new look

FLORA ELLIS “WE DON’T HAVE TIME TO LOSE, SO DON’T WASTE YOURS”

PLUS: A wish come true “Having Kia home means more to us than lots of presents”

12 Days of Christmas Read how, with your support, we will help families this Christmas

rainbowtrust.org.uk


E M ELCO

W

Heather Wood

In this edition we hear from some amazing volunteers, the families we help and our supporters, plus we look at how Rainbow Trust is putting your money to good use.

You’ll also see that after 28 years we’ve taken a bold step and changed the way we look. You can read more about our new look and why we’ve changed on p5. I hope the stories from the families we support and those from our Family Support Workers inspire you as much as they inspire us.

VOLUNTEER VIEWPOINT We caught up with Fiona who is a volunteer with our Durham Care team. Why did you choose to volunteer with Rainbow Trust? I retired over a year ago from teaching art at a junior school. In my twenties, I was a hospital play-worker and had always wanted to go back to that environment when I retired.

FIONA KRAMER Fiona is one of 29 Family Support Volunteers who work alongside our Care teams. 2|

What kind of work do you do for the children you support? I work in the drop-in group at the Royal Victoria

As always, we’d love to hear your thoughts, so please do get in touch with us: news@rainbowtrust.org.uk In the meantime, I would like to wish you all a Merry Christmas and a wonderful New Year.

Heather Wood Chief Executive

Infirmary in Newcastle teaching arts and crafts every week. Last week I took in two balls of salt dough and the children had great fun playing with it.

The reason that I love Rainbow Trust is that they think about all of the little things that parents in this position might need.

What advice would you give to anyone thinking of becoming a volunteer? If there is something you love doing and have the time, go for it. I love doing something so worthwhile.

Front Cover star: Cavalli Deathridge at least year’s Christmas Carol Concert.


S E O R E ING H

FU

S I A R D N

Staff from Deutsche Bank have raised a staggering £880,000 for Rainbow Trust so far this year! Fundraising has included cake sales, the DeutscheBike cycle event and on 25 September, many employees generously donated a day’s salary. Thank you to everyone at Deutsche Bank. Kelly Holliday from Workington in Cumbria was a finalist in the 2014 Pride of Britain Fundraiser Award for raising almost £100,000 for Rainbow Trust and her local hospital after her daughter, Isla, died from a rare genetic condition. You can see Kelly’s inspiring story at rainbowtrust.org.uk/about/ familystories

Thank

YOU You are all fantastic!

Twelve-year-old Molly from Wiltshire raised £41.50 from a sponsored silence. She chose to support Rainbow Trust after seeing the impact, of having a little brother with complex needs, on her best friend’s life and she wanted to help other families too. Molly was silent from 8.30am until 5.00pm. Well done Molly – we hope you made up for it afterwards!

IT’S NOT TOO LATE! You can still support Rainbow Trust this Christmas. Get family, friends and colleagues together and do something festive to raise money. For tips and ideas visit: rainbowtrust.org.uk/get-involved |3


T ’ N S E O D R E T PE E M I T E HAV E T S A TO W

is ss Peter Ell orker Je Above: pport W u S y il r m te a Pe Below: F mas and with Tho

Three-year-old Peter was always well, so when he was diagnosed with cancer, his parents were devastated.

Life is difficult for the family as Peter’s treatment involves bone-marrow tests and lumbar punctures, and if his temperature rises above 38˚C, they must rush him into hospital, where he stays for at least 48 hours.

Peter’s twin brother, Thomas, struggled when he saw doctors take his brother away for treatment. “Peter, where is Peter? What have you done to him?” he asked Flora, his mum. This was heartbreaking for Flora as she always tries to stay strong for her children.

The family is often split as they need to look after both children.

Our Family Support Worker, Jess, has been a tremendous help to the family. Peter has another two years of treatment ahead of him and Jess helps with transport and looking after Thomas when mum and dad are with Peter.

Flora supported this year’s Big Hour campaign, and when the clocks went back in October, she asked families to spend their extra hour baking together. For Flora and her family, time with their children is very precious.

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Don’t waste time, use it wisely and do something amazing. We don’t have time to lose, so don’t waste yours.

SEE MORE You can see more of Thomas and Peter Ellis by visiting: rainbowtrust.org.uk/about/ familystories

SUPPORT US To help us support more families like Peter’s text RAINBOW to 70800 to donate £5 or visit rainbowtrust.org.uk/donate Texts cost £5 plus network charges. Rainbow Trust will receive 95p for every £1 donated. Please obtain the bill payer’s permission first.


ann ah M

cClu ne

A BRAND NEW LOOK

Cred

it: H

Rainbow Trust has looked the same since we started in 1986. That was over 28 years ago, before the internet and when people were still watching TV on a big black and white screen! A lot has changed since then, and so have we.

£55

could give a sibling of a seriously ill child a magical afternoon

Right: The new Rainbow Trust logo

More families than ever before received our help last year, but there are still many families across the country, who need our bespoke support. We also want the needs of these families to be heard by everyone who makes decisions that affect them. We have received more and more feedback about how we look. The families we support told us that we looked too medical, that our logo was confusing and that teenagers thought we looked childish and so were turning down our support.

SEE MORE Visit our new website and watch our animation, which explains more about our new look rainbowtrust.org.uk

So we decided to change. We needed a logo that stood out from the crowd and truly reflected what we did.

Our new logo, called ‘Facets of Light’, represents all the areas of support we provide coming together as one.

Our website has also had a make-over, so it’s more user friendly and can be viewed easily on PCs, mobile phones and tablets. Most importantly, it now offers easy-to-access information for the families we support; with advice, family stories, signposting to services, and useful guides on how to cope in certain situations. We hope you like the change. Although as a charity we’ve moved on since 1986, our vision remains the same. That vision is to ensure that one day every family who has a child with a serious illness will have access to a Rainbow Trust Carer. We know that this new look, along with your continued and valuable support, will help us reach more families. |5


t e i u q s a w S A M T S I ” R l u H f i t “C u a e b t u b Kia has battled health problems since birth. She has a genetic disorder that’s so rare it took doctors seven years to fully understand. Those years involved regular trips to the hospital with several illnesses (some life threatening), tests and visits to different specialists. The emotional and financial strain on the family was enormous. Mum, Carol, had to give up work and couldn’t afford the mortgage on just dad, Dean’s, wage. They continued to juggle their busy lives with Kia and her older brother, Brayden. Kia needed a bone-marrow transplant after an intense course of chemotherapy, during which she lost all of her hair. She had to spend 42 days in hospital isolation. After the transplant, Kia and her mum were kept in semiisolation throughout Christmas to reduce the risk of Kia picking up potentially fatal infections.

6|

Rainbow Trust Family Support Worker, Carol, met the family and immediately began supporting them. Carol was someone else to talk to, someone for Kia to have fun with, and a different voice in the house which reduced the pressure on mum.

From the minute Carol walked in, she gave us a new lease of life.

“As life got easier, just having someone come in and say, let’s go to the park, gave me strength. Knowing there was someone looking after Kia or even hearing another voice in the house gave me muchneeded relief.” Carol spent time with Kia making Christmas cards, which led to Kia winning the Rainbow Trust Design a Christmas Card Competition. “Christmas was quiet that year,” says Carol. “It had to be; a real eye-opener. It made me realise what Christmas was really about. Not gifts under the tree, not shopping, but everyone home together and Kia with us.” »


Christmas

APPEAL

Please donate now! » For so many Christmases the family had wondered if it would be Kia’s last. Despite the isolation, having Kia home meant more to the family than a Christmas tree surrounded by heaps of gifts. Kia is now 16, and although she has had more operations, the family is looking forward to a bright future. “This is her time to shine and grab a bit of life. It’s a new chapter that we are all excited about,” says mum.

Now, when I sit back and watch her putting that star on the tree, I realise how far we’ve come.

Every Christmas since the transplant, the family takes out their decorations, puts them up and lets Kia put the star on top of the tree. Mum says, “I realise another year has gone. How did we get here? Each year is an unbelievable feeling, knowing we’re another year along.”

£25 could help

make a family’s life easier over Christmas by providing practical support in their home

HOW TO DONATE There are so many other families like Kia’s and every one of them deserves to have the best Christmas possible. Please donate to our ‘Together at Christmas’ Appeal and help us raise £15,000 to give our unique support to more families this Christmas. You can complete the donation form enclosed, call: 01372 220086 or visit:

rainbowtrust.org.uk/12-ways |7


. . . S A M T S I R H FC

O S Y A D 12

For most people, Christmas is a special time, but many of the families we support may be unable to make plans for Christmas, as things constantly change with their child’s condition. Some families find it hard to maintain normality. Our Family Support Workers have a very different insight into Christmas. Here are some of the things they do with families and children over the festive period to make life a little bit easier.

On the

3rd day of Christmas

Panagiotis has organised a ‘Rattle and Chuckle’ fun day for families staying on the neonatal ward of Chelsea and Westminster Hospital.

On the

4th day of Christmas

Kath is visiting families at the Royal Manchester Children’s Hospital for festive arts and crafts, making glittery Christmas trees, Santas and snowmen.

1st day of Christmas

On the

2nd day of Christmas

On the

5th day of Christmas

Annalie, our Sibling Support Worker in central London, is holding her monthly arts therapy group for bereaved siblings. Everyone will reflect on 2014 and then say goodbye until the New Year.

Wave 105FM Cash for Kids and Thomas Cook Children’s Charity have invited our families from Southampton on a special flight. Children should keep an eye out for Santa as he often does test flights with his reindeer.

On the

On the

The Cumbria and Lancashire team is holding a Christmas party at their drop-in group for families to enjoy music, games and make Christmas novelties.

6th day of Christmas

In between family visits, the West London team is Christmas cookie baking and decorating with siblings.

S O H N I S A M T H CHRIS

T I W G COPIN Christmas is a time for family, but what if your child is spending it in hospital? Leanne Cummins is a Family Support Worker in our Durham team and helps families prepare for Christmas in hospital. Many 8|

families are used to spending time in hospital, but there are still things they can do to make it as enjoyable as possible.

so simple things like writing a small note at the end of their Christmas letter explaining where they are helps.”

“The hardest impact is usually on children who are old enough to understand what is going on.”

Hospitals will make every effort to make Christmas as festive as they can. “Make sure you have asked the hospital what their plans are and then fit your Christmas around them. In our local hospital in Newcastle, there

Leanne explains, “sometimes children worry that Santa won’t know where they are to visit,


On the

7th day of Christmas

On the

8th day of Christmas

On the

Care Volunteer, Amanda, will join Family Support Worker, Janet, on long journeys to and from the hospital entertaining Rowan and giving mum some muchneeded down time.

On the

Santa is visiting Great Ormond Street Hospital, and our Family Support Workers (who know him very well!), will make sure he makes a special effort to meet the children we support.

On the

Clare is making a Santa Christmas cake that will be raffled at the local Christmas Carol Concert attended by the families we support in the North East.

12th day of Christmas

Our Family Support Workers and Family Support Volunteers will be visiting children who are too unwell to be home for Christmas.

9th day of Christmas

Jade, from our Essex team, is making Christmas goody boxes and stockings with families for children that may have to spend Christmas in hospital.

On the

11th day of Christmas

10th day of Christmas

Family Support Workers in Swindon are dressing up as Santa and his elves for their drop-in group Christmas party.

89%

of the children we support are under 10

L A T I P S are usually visits from local sporting stars and of course, from Santa himself.” “Children in isolation won’t be allowed decorations in their room due to the risk of infection, but you can decorate the windows on the outside, so it still feels Christmassy. You will be allowed to take presents in, but speak to the nurse first so the presents and wrapping paper can be disinfected.”

Most of all, Leanne encourages families to embrace Christmas. “Keep things as normal as possible. If you usually watch a DVD on Christmas Eve, then do the same, but do it in hospital.” Some hospitals may provide Christmas dinner and grandparents are usually invited too, so bring the family and presents to the hospital. Even in hospital you can still enjoy a family Christmas, and you won’t have to cook the dinner!”

PLEASE DONATE If you would like to make a special Christmas donation, please complete the form enclosed, or visit

rainbowtrust.org.uk/12-ways


. . . S A M T S I R H RC

O F T N A LL I W

A

We asked some of the children we support what they would like for Christmas and here are a few of their answers.

Amelia wishes her brother could walk

Josh wants his little sister to come home for Christmas

Gracie wants a baby that talks and some cheese and onion crisps

Jenny wants her brother to be healthy and to never go to hospital again

60

SECONDS ...with Santa’s helper So many wonderful people volunteer for Rainbow Trust. Some dress up as mascots, help out at balls, work in the office or shops, and some help our Family Support Workers. We caught 60 seconds with one of Santa’s helpers at the Royal Mews.

How did you get into being Santa? I am a third generation children’s entertainer. My father played Santa for over 40 years. What preparation do you have to do? I have a very strict diet of sugary foods to put on weight. I grow a beard, dry clean my red suit, polish my boots and practise my ‘Ho Ho Ho!” 10|

What’s your favourite thing about being Santa? Making children smile. Any funny memories? Last year, I asked a young boy if he’d been a good boy. He replied with, “Yes! Well, I was. Until I dropped Mummy’s new iPhone down the toilet.” Trying not to smile, I asked him “What do you want for Christmas this year?” He replied, “A new toilet!” What does the Queen say to you? I undertake the role of Santa at the Royal Mews Carol Singing and last year the Queen asked me if I had played Santa before, to which I responded, “Yes, Your Majesty, but not in front of you”.

VOLUNTEER To find out more about volunteering please call: 01372 220043 or visit: rainbowtrust.org.uk/volunteer


Whitney would like a cardboard cutout of Harry Styles from One Direction

Six-year-old Millie wants a One Direction blanket and a real monkey. She will be in hospital for Christmas having radiotherapy for her brain tumour

EVENTS London Carol Concert, 4 December 2014 Celebrate the beginning of Christmas with our London Carol Concert in the beautiful surroundings of St Paul’s Church, Knightsbridge.

Santa Fun Run, London 7 December 2014 Why not join 3,000 Santas in London’s biggest Santa Run and support families with a terminally ill child?

Vitality Bath Half-Marathon 1 March 2015 A traffic-free, fast and flat course, suitable for all abilities from beginners whose main aim is to complete the course, to more regular long-distance event runners, looking to beat their personal best.

Prudential RideLondon-Surrey 100 2 August 2015

£15

To make a child smile with a glitter craft session

Follow in the tracks of Olympic greats Bradley Wiggins and Lizzie Armitstead to become a cycling hero for Rainbow Trust.

BUPA Great North Run 13 September 2015 Enjoy the fantastic atmosphere of the world’s biggest half marathon, broadcast live on the BBC, and a fly-by from the Red Arrows.

SIGN UP ONLINE To see our full range of events, find out more or sign up, go online: rainbowtrust.org.uk/events |11


RAFFLE Support Rainbow Trust this Christmas, buy your ticket today at raffleplayer.com/rainbowtrust Closing date is 23 December 2014.

1ST PRIZE

Boodles diamond jewellery worth £5,000

2ND PRIZE

Luxury overnight stay in London with dinner

3RD PRIZE

£250

Tickets just

£1

SHOP TO GIVE Our online shop is packed with a great selection of Christmas cards.

Prices start at just £2.50 for a pack of 10 cards. Browse our full card range today at

rainbowtrust.org.uk/shop Head Office 6 Cleeve Court, Cleeve Road, Leatherhead, Surrey KT22 7UD T: 01372 363438

Registered Charity No. 1070532.

North East Office Forster House, Forster Business Centre, Finchale Road, Newton Hall, Durham DH1 5HL T: 0191 386 4400

North West Office Chambers Business Centre, Chapel Road, Hollinwood Oldham OL8 4QQ T: 0161 633 4684 E: enquiries@rainbowtrust.org.uk rainbowtrust.org.uk @RainbowTrustCC facebook.com/RainbowTrust

Rainbow Trust Magazine Winter 2014  

Presenting our very first new look magazine! Catch up on what has been going on in Rainbow Trust Children's Charity and hear how we have bee...

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