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RAINBO

W TRUS T

MAGAZ

INE

SPRING/ SUMME R

2015

CLEO’S STORY “NICKI’S THERE WHEN THINGS JUST GET ON TOP OF ME.”

PLUS:

Our first Neonatal Support Worker “I try to make things a little easier by simply being there for them”

Summer Survival Tips activities to keep the whole family entertained this summer


! E R E H ING IS

SPR

WELCOME to the spring/summer edition of our magazine! In this issue you will hear from some of the truly inspirational families we support, we introduce our new neonatal pilot and showcase some exciting events.

CELEB WATCH OUR star-studded

friends kept themselves busy these past few months supporting our work. 2|

As the warm weather approaches we look forward to getting out and about and having time to spend with our families. But for many families, keeping children occupied during the spring and summer holidays can be a challenge. Please have a look at our summer

Stylist and TV presenter, Angela Scanlon hosted our annual fashion event, Trust in Fashion at the stunning Savoy Hotel in London, in March. Guests were treated to afternoon tea whilst enjoying the latest Spring/Summer trends from THEOUTNET.COM. Made in Chelsea star Hugo Taylor completed the ultimate challenge by running this year’s Virgin Money London Marathon for Rainbow Trust. In December, we held our Christmas Carol Concert

survival tips on page 7 or our picture gallery update on page 10.

Heather Wood Chief Executive

DID YOU KNOW? over 97% of our income comes from our supporters, we rely on public generosity to support families.

at the beautiful St. Paul’s Church in Knightsbridge. Special guest readers included Sheila Hancock, Dominic West, Rupert Penry-Jones, Gillian Wright and Pippa Haywood. Together we raised over £22,000. Only the Young, Annabel Croft, Gillian Wright and Austin Healey were among the famous faces who helped fundraise for our 12 Ways of Christmas campaign. The stars took to social media to help raise money and make a difference to the families we support this Christmas.


1,692 families supported

10,410 hours of home support

Emotional support, respite, Our Family Support Workers around the country meals cooked, baths run and storybooks read. support the whole family.

3,394 hours of sibling support Maintaining school attendance, arts and crafts, cinema trips, fun and laughter.

OUR IMPACT Thanks to your amazing support we have accomplished so much.

7,671 hours of hospital support

994 hours of bereavement support For parents, grandparents and siblings, face-to-face and over the phone, at any time of the night or day.

Helping to organise appointments, explaining illnesses and treatment, looking after siblings and staying with sick children. We also support families in the neonatal unit.

SHOW YOU CARE There are currently so many families in England who do not have access to our support. Show you care and donate today by visiting rainbowtrust.org.uk/donate or calling 01372 220086

READ INSIDE Working with the Chelsea & Westminster Hospital in London, we are piloting a Neonatal Family Support service to help families cope with the pressures and complexities of having a seriously ill new born baby in intensive care. The pilot proved so successful we now have our first Neonatal Support Worker in post (read interview on page 15). |3


CATCHI WITH RO

ROWAN Todd

and her family live in Surrey and recently featured in our latest fundraising appeal. In early 2010, their four year old daughter, Rowan was diagnosed with a brain tumour and underwent 18 months of chemotherapy.

on treatment days, she collects them at 8am for Rowan’s appointment in London at 10am.

Janet waits as Rowan has various health checks and sees different doctors. For Beth, it’s a stressful day of watching her child being prodded and poked, while preparing for chemotherapy. Having As a result of the tumour Janet there to support Rowan lost much of her her relieves some of the sight and is now learning pressures of the very long to walk using a cane. Janet, day while they try and one of our Surrey Family keep Rowan entertained Support Workers, has been and distracted. supporting her family for Janet drives them home the past five years. from the hospital in the Janet transports Rowan evening which means Beth and Beth, her mum, to and Rowan can begin to hospital appointments and relax after a long day. The 4|

drive home gives Beth time to talk to Janet about the day and any issues she may have.

Having a nonmedical person to talk to allows parents to talk openly about their child’s treatment which helps them process what their child is going through. When, Rowan developed septicaemia and broke her back last year, Janet helped out by taking Rowan and Beth out with Rowan’s wheelchair and took the pair to hospital appointments while Rowan was less mobile. Janet


ING UP OWAN

spent time with Rowan entertaining her while she was at home and was able to offer Beth emotional support while she was housebound with Rowan. After five long years, Rowan had her last treatment on Monday 2 March 2015. Rowan and her family want to give back to Rainbow Trust and raise money to help other families. In February, ITV broadcaster and Rainbow Trust Patron, Mary Nightingale shared their story during a Radio 4 Charity Appeal, she said:

Right: Rowan, with her sister, Petra Below: Rowan with Rainbow Trust Family Support Worker, Janet

“Rainbow Trust, [is] an organisation that’s very dear to my heart, and I’m honoured to be a Patron. Rainbow Trust supports families with seriously ill children, it can bring parents back from the brink of despair.” In May, Will Todd, Rowan’s composer and pianist dad, hosted Mass in Blue, a ‘Come and Sing’ event at St John’s Smith Square, London which saw 500 people buy tickets to learn to sing Will’s jazz-inspired music.

We urgently need to raise more money for Family Support Workers so that we can support more families.

Visit rainbowtrust.org.uk/donate or call 01372 220086 today to donate £10.

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VOLUNTEERS’

WEEK EVERY year

the hard work and dedication of hundreds of volunteers make our support possible. In 2014 we received 31,609 hours of volunteer support which is the equivalent of 19 working years! Volunteers’ Week (1-7 June) celebrates the amazing contributions of volunteers across the country and we want to take this opportunity to say a massive thank you for the time and dedication our volunteers give to us.

Volunteers get involved with everything we do, they help at events, work in our charity shops, join care teams on family visits, or help at support groups and in our offices. For Volunteers’ Week, we are calling all our volunteers to share pictures of themselves on social media using the hashtag #imavolunteer showcasing all the different ways they get involved.

If you would like to volunteer for Rainbow Trust please contact Andrea Kelley on volunteering@ rainbowtrust.org.uk or call 01372 220043.

T N I O P W EER VIE

VOLUNT

I support Andrea, the Volunteer Development Manager, by responding to volunteer enquiries as well as general admin. I’ve been doing it for three years What made you become now and I still enjoy it. a volunteer for Rainbow What do you enjoy most Trust? about volunteering? I’d been looking to It’s a fantastic charity to volunteer in the local be involved with. For me, area when I came across I wanted to work in an Rainbow Trust. I instantly office so the role suits me liked the sound of the role as it was more varied than perfectly and everyone is really friendly. some others I had seen.

We caught up with Mary McIntosh who volunteers at our head office in Leatherhead.

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What kind of work do you do with us?

Why should anyone volunteer for Rainbow Trust? Whether it be fundraising at events, working in the shop or helping in the office, Rainbow Trust will provide you with the skills and experience you want which makes it so worthwhile.

GET INVOLVED Contact Andrea Kelley on volunteering@ rainbowtrust.org.uk or call 01372 220043


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Summer is a

great time of year for many children but for parents, the long holidays can bring the increased pressure of keeping children entertained during days at home. 3

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SUMMER SURVIVAL TIPS Here are a few activities to keep the whole family entertained this summer. Check out our Pinterest boards for more ideas! pinterest.com/rainbowtrustcc 1 Fresh air is good for

2 A quick and easy

4 Water play is always

5 Frozen fun. Take your

everyone. A sheet draped over the washing line, some pillows, books and a picnic lunch and a long afternoon can be spent in perfect harmony making dens and castles.

great fun. Save up empty plastic bottles and create a water shoot, proving endless fun for kids of all ages.

afternoon of fun. All you need is a roll of coloured tape, a straw and a small ball. Create a number of tracks side by side and race each other to the finish line.

children’s plastic toys and put them in a bowl of water and freeze overnight. The next day watch their delight as the sun melts the ice releasing their toy!

3 Reveal your child’s

inner gardener by growing seedlings in eggshells. Children can take responsibility for nurturing and eventually plant them in the garden or in a window box.

YOU CAN HELP £5 pays for a craft pack that our Family Support Workers use to help children talk about their emotions. Visit rainbowtrust.org.uk/donate


CELEBRATING SIBLINGS BORN Friends is our annual event highlighting the bond between brothers and sisters and the pressures they can face when their sibling is seriously ill.

This year Born Friends took place on National Sibling Day, Friday 10 April.

DONATING COULDN’T BE EASIER £22 pays for an hour’s vital support for a family. Visit rainbowtrust.org.uk/donate or call 01372 220086 to donate today.

EMILY AND GRACIE THIRTEEN year

old Gracie carries a lot of worry.

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Her sixteen year old sister, Emily, has a brain illness which is worrying for Gracie. Emily struggles to swallow and often chokes; life at home is very stressful. The family don’t go out as much as they’d like, keeping Emily safe is paramount and they

Right: Emily with mum, and Rainbow Trust Family Support Worker, Jayne Far right: Iona and Cameron Below right: Their little brother James

can do that best at home. Gracie feels that she can’t talk to her friends about what she’s going through as none of them will understand. She says,

‘’It’s been hard, an emotional rollercoaster, but with Rainbow Trust’s help, it’s been easier.

“The sibling groups run by Rainbow Trust take me away from home and Emily’s illness. It takes my mind off things.” This respite is exactly what the sibling groups aim to achieve. For the siblings of sick children, doing the regular and normal activities that other families do, is paramount.


Twins, Peter and Thomas, with Rainbow Trust Family Support Worker, Jess.

IONA AND CAMERON IONA and Cameron have a little brother called James.

James was born with a genetic disorder which has affected his physical, mental and emotional development and Kelley, their mum, has spent a lot of time in hospital with James and caring for him 24 hours a day at home.

Iona and Cameron spend time at one of Rainbow Trust’s sibling groups where brothers and sisters of sick children can spend time together. Like all of us, being with people in similar circumstances helps us to feel more normal and for these children this space does just that. At these groups, Iona says,

“They understand what it’s like for us. Without the groups I’d feel more alone.” “we talk about school, what it’s like at home and about how other people manage having a sick brother or sister.”

To find out more, visit rainbowtrust.org.uk or find us on facebook and twitter

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N O G N I O G S ’ T WHA 2

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RAINBOW TRUST

IN PICTURES 1

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1. Chris Garlick, Rainbow Trust Family Support Worker from the Swindon care team ran the Bath Half Marathon with Matt Hunter from Devizes, a dad supported by Chris. 2. Two year old Dominic had a great time playing the drums with his Family Support Worker, Shelley. 3. Sabrina, a Family Support Worker from the Durham care team, helps out at a Remembrance Day. 4,5,6. Eshaal (aged 5), Hafsah (aged 6) and Will (aged 6) enjoy a fabulous day out at Thames Valley Adventure Playground.


RAINBOW TRUST REMEMBERS Many of the families we support will have to cope with the death of their child. This year, events are taking place across the country, from 18–30 May, as part of Rainbow Trust Remembers. The week is dedicated to every family we support past and present, to celebrate the lives of their loved ones who have died. Here are some of the events taking place... A Tribute Day in Lancaster The Cumbria care team is hosting a day of readings and plate decorating for bereaved children and adults supported by Rainbow Trust at Lancaster House Hotel. Families can take part in a balloon release and sign the Book of Remembrance.

A Tribute Day in Swindon The Swindon care team is hosting a Remembrance Walk for children and adults at Westonbirt Arboretum on 28 May.

SHOW YOU CARE £20 would pay for a memory box for a grieving sibling or parent. Visit rainbowtrust.org.uk/donate or call 01372 220086 to donate £20 today

A Tribute Day in Durham Each year the Durham care team holds a tribute day for bereaved families in Redworth Hall Hotel. This year, the day will include speakers, poems, candle lighting and a balloon release. A Tribute Day in Manchester Our Manchester care team is holding a remembrance service on Tuesday 19 May 6–8pm at Victoria Baths. A Tribute Day in Surrey On Saturday 30 May in Belmont, the Surrey care team is hosting a Rainbow Trust Remembers Day with some of the families they support.

A Tribute Day in Southampton The Southampton care team, is inviting families to the beach to share memories of the children and families they have supported. They will write their memories on paper and attach them to balloons which they will then release all together.

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Each operation your child has you worry they might die. You need someone to talk to who knows that, so you don’t need to keep saying it.

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SOMEONE TO TALK TO

Pictured: Cleo with mum,

Jo


WATCHING

Since having their first daughter, Bo, they had Jo play with Cleo, her been through more than bright and happy little any parent should ever girl, it’s hard to imagine experience in one lifetime. that moment when In 2005, Jo gave birth to a Jo and her husband Rupert were first told still born baby boy. Since there was something then she has had three failed IVF attempts, ectopic wrong with their pregnancies and a number of unborn baby. miscarriages. When she fell pregnant with Cleo, Jo and Rupert were so happy but fate threw them something they never wanted to face again – the prospect of losing another child.

Jo’s 20 week pre-natal scan showed that baby Cleo had only ‘half a heart’ and would need a series of open heart surgeries.

supports the family. She helps with hospital visits, “I don’t think people understand the logistical problems of taking a child to a hospital appointment. You’re thinking about routes, traffic jams and parking tickets and at the same time, you’re thinking of what you’re going to ask the doctor and how you’re going to get your toddler to sit still during an assessment or treatment,” says Jo.

“Nicki’s also there when things just get on top of me. She’ll sit with me and just be there when I’m crying.”

Before an operation last year, “Nicki and I would talk things through. As much as she could, she emotionally Cleo was born in March 2011 prepared me for whatever and three hours after birth, might happen. Each Cleo was transferred to operation your child has you another hospital where, four worry they might die. You days later, she underwent her need someone to talk to who first major heart surgery. knows that, so you don’t need to keep saying it.” The family found it very difficult to cope and they Rainbow Trust makes a were introduced to huge difference to families Rainbow Trust Family knowing that there’s Support Worker, Nicki, someone there who can help when Cleo was three months emotionally and practically old and the family were when it feels like their world preparing for her second is falling apart. We are there operation. from diagnosis to treatment Four years on Nicki still

and beyond for as long as a family needs us.

SHOW YOU CARE £22 pays for an hour’s life changing support for a family with a terminally ill child. Visit rainbowtrust.org.uk/donate or call 01372 220086 to donate £22 today.

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ES O R E H G N I S I A R UND

F

Our lovely Essex Friends spent the festive season visiting the Harold Wood residents in Santa’s sleigh. They raised an amazing £2,500. Thank you! Runa Haque-Bousque completed a trek in Uganda last October and raised a staggering £13,554.50. Runa wanted to show her support to Rainbow Trust after her family was supported by us a few years ago. You’ve done us proud Runa, thank you! 14|

Staff at World Duty Free have pulled out all of the stops for Rainbow Trust over the past two years. Fundraising efforts include a 24-hour walk from London to Brighton, a 1,000-mile cycle from Amsterdam to Budapest and some brave staff members skydiving. So far, they have raised a whopping £127,685. You name it, they have done it, from till point collection pots right through to running half marathons! Thank you team for your ongoing support.

Thank

YOU You are all fantastic!

When Steven Summers, a father from North Yorkshire heard about Rainbow Trust he felt compelled to do something for the charity. Steven signed up for the ultimate challenge and this September he will attempt to climb Mount Kilimanjaro, Africa’s highest peak. Setting out with a target of raising £3,800, to date he has raised almost £8,000!

To find out how you can get involved too visit:

rainbowtrust.org.uk/getinvolved


WE NEED MORE SEANS! DID you see Sean on BBC Children in Need?

Sean, our Family Support Worker in the Manchester Care Team, was choosen to feature on BBC Children in Need last November. The film shows Sean helping four families. Sometimes he helps on a family day out, other times he plays and paints with children like two year old leaukemia patient Zerina, as he carefully helps them to

MEET AMY our first Neonatal Family Support Worker

WE are pleased to be

working with the Chelsea & Westminster Hospital in London, where we are piloting a unique Neonatal Family Support service. This new service helps families cope with the pressures and complexities of having a new born baby in intensive care. Amy, our first Neonatal Family Support Worker

Pictured: Zerina and family with Sean

understand and accept their illness. Children in Need is giving Rainbow Trust £70,000 over three years to support our Manchester Care Team. It will fund vital bespoke support to families in the local area as they struggle to cope with one of the toughest times in their life.

works at the hospital and has so far supported 20 families in just 12 weeks coping with a newborn baby who is seriously ill. Given the sensitive nature of the issues parents face in intensive care they often don’t consider asking for any kind of help and the idea of inviting a stranger into their crisis is the last thing on their mind. Amy said: “The parents I support are focused entirely on spending every minute with the baby they expected to be perfectly healthy. My challenge has

To watch again please visit:

rainbowtrust.org.uk/getinvolved/children-in-need To help fund more Family Support Workers like Sean, donate now by visiting rainbowtrust.org.uk/donate or calling 01372 220086

been to let people know that I am here to help without being intrusive, I try to make this difficult time a little easier by just being there purely for the emotional and practical support that doctors and nurses so often do not have time for.”

To find out more and provide urgent support to our Neonatal Family Support programme visit our website rainbowtrust. org.uk/our-impact/ neonatal-care

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F L E S R E YOU

G N E L L CHA Rainbow Trust supports families through an unimaginably tough time and with the fantastic fundraising of our supporters we can continue this work. You can help today by signing up for one of these fabulous events; there is even more choice on our website rainbowtrust.org.uk/events Colour5k Saturday, 18 July, Dorking

Join us for one of the craziest fun runs ever! Run, walk or stroll in an un-timed race and get doused from head to toe in a different colour at each colour stop. We also need volunteers to be colour bandits and throw some paint! The Ultra Challenge Series

Registered Charity No. 1070532.

Dates throughout the year

Push yourself to the limit with an ultra-challenge. Choose one of five endurance treks across the UK and then choose your distance (25k, 50k or 100k). You can walk, jog or run, individually or as part of a team, these events are perfect for all fitness levels.

Skydive Any date

Take the plunge with a 10,000ft tandem skydive. Wherever you live in the UK there is an airfield nearby where an adrenaline filled opportunity awaits. “The adrenaline rush was amazing. Skydiving for Rainbow Trust meant I achieved something great for others as well as myself.” Tom, skydiver

Morrisons Great North Run Sunday, 13 September

Enjoy the fantastic atmosphere of the world’s biggest half-marathon, broadcast live on the BBC. Join elite athletes, wheelchair-racers, funrunners and celebrities as

you run over the iconic Tyne Bridge to South Shields. London to Paris Cycle Wednesday, 9 – Sunday, 13 September

Cycle through beautiful English villages and into stunning rural France; you’ll pass historical landmarks and the famous battlefields of World War I en-route to Paris.

SIGN UP TODAY! We’ll support you on every step of your amazing journey. Visit: rainbowtrust.org.uk/events

Rainbow Trust Spring/Summer 2015  

Read all about our year so far. Catch up with Rowan, hear from our first Neonatal Support Worker and meet some of our families and fundraisi...

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