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Magazine

Autumn/Winter 2013 Spring/Summer 2014

From catwalks to skydiving: get involved!

What to say

to the parents of a sick child

“Life goes on, friends go back to work, but Rainbow Trust is always there�

Raise fund

s

with an Ea ster egg hunt!

60 seconds with... a family support volunteer

Facing the unknown together How we help

How you can help a family today |1


Welcome When a child is diagnosed with a life threatening or terminal illness, their family often needs help to cope. At Rainbow Trust we provide the support they need to face the unthinkable, but we can’t do this without our valuable team of volunteers. When I meet our volunteers I’m always humbled by their enthusiasm and commitment to what we do. Our volunteers often tell me that they find their work for Rainbow Trust inspiring, but my team and I admire their selflessness and kindness. We are very fortunate that more and more people are willing to become volunteers. This year we saw a 15% increase in volunteering and in 2012/13 volunteers donated more than 30,000 hours of their time, that’s the equivalent of 4,310 working days, or 18 years of extra help and support.

Volunteering is not only good for Rainbow Trust, but it’s good for our society: volunteers learn new skills and share their experience and talents with others. In this issue of the magazine you’ll read more about how our volunteers support families. If after reading the articles you would like to offer your time, please do get in touch. It’s not only by volunteering that you help a sick child and their family. I would like to thank every one who has raised money for us, whether by enduring a gruelling challenge, coming up with an imaginative charity event, or simply pausing to think about our families and sending a gift to help. If you’re searching for ways to raise money this spring, look no further. We’ve devised an easy-tofollow Easter Egg Hunt for all the family. This will raise both awareness of Rainbow Trust Children’s Charity and raise vital funds to help us continue supporting families with terminally ill children. Thank you and a Happy Easter! Heather Wood Chief Executive

”How could I not get involved?” R

ainbow Trust Patron and tennis legend Annabel Croft talks motherhood and giving back… It’s unimaginable to think of your own child being so sick. The reason I love Rainbow Trust is that they think about all of the little things that parents in this position might need, whether it’s helping out with siblings or just giving mum the chance to nip to the shops.

Annabel Croft with Babette and Stevie

Cover picture: 11 month old Roman Maskell was born without an oesophagus and with his stomach attached to his windpipe. He needs constant care. Rainbow Trust currently supports his family. 2|

A tennis star now turned successful TV presenter, Annabel Croft is also a mother of three children. The glamorous former professional tennis player chatted to us after appearing at the grand opening of our second charity shop in Cheam, Surrey. She said: “When I was asked to become a Rainbow Trust Patron it was an easy decision. How could I not get involved with a charity that helps people when they are at their lowest and supports them for as long as they need it? I’m happy to help in any way that I can.”

This year volunteers do equivalent of 1 extra sup


Small actions, big impact

Bunny s! s e n i s Bu

E

aster is a wonderful time of year. However, the school holidays also mean keeping the children entertained for two whole weeks.

One fun way to keep your children and their friends entertained is to hold a holiday Easter Egg Hunt. Getting them running around will keep them amused and is also a great way to raise money for Rainbow Trust. Ask your children to invite their friends and donate £1 to take part in the ‘eggstravaganza’. If the weather is good, you can even hide your eggs outside to encourage the little ones to get some fresh air. By using rainbow-coloured eggs, hosting a hunt can help raise awareness about Rainbow Trust and its work. Rainbow Trust Family Support Workers also use these egg hunts to provide a simple way to start a difficult conversation with friends or family members about children coping with a serious illness.

To encourage creativity, why not cut out and decorate cardboard eggs with your children first? Once they’re hidden, reward those who find the most during the hunt with a prize. Another alternative is to hide one egg and a series of clues that lead the players to the egg.

How to host an Easter egg hunt: 1. 2.

Gather together seven Easter eggs, one for each colour of the rainbow.

Hide the eggs around your house and garden, or in a safe area of your local park. Think creatively and find interesting hiding spots that will make the game more of a challenge.

3. 4.

Invite children and their families to participate, and ask each to pay £1 to take part.

Let the children loose! Visit rainbowtrust.org.uk for more fab fundraising ideas!

Fundraising heroes A

ll our supporters work hard to find exciting new ways to raise money, but we’re especially proud of these fundraising heroes. World War Two veteran Albert Bennett, 99, has donated to us the proceeds of his new book, A Forgotten Squadron, a tribute to those who fought in the Far East until January 1944. His book can be purchased from rainbowtrust.org.uk/shop Alex Boardman, 27, from Northamptonshire, embarked on an adventure of a lifetime in aid of Rainbow Trust when he trekked 2,184 miles through the Appalachians. Armed with only a tent, Alex trailed across 14 US states and raised an amazing £1,612.

r our onated the 18 years of pport!

Go-getting grandad Chris Waddington, 44, walked 33 miles from Everton FC’s ground to Manchester City’s ground in October to raise £10,000 as a tribute to his daughter Amy, who

died when she was just four minutes old. “Her death was devastating for us and we didn’t see it coming. It must be even harder for the families that Rainbow Trust helps as they know how ill their children are,” he said. North East partygoers joined Lady Robson, wife of the late football legend Sir Bobby Robson, at a fabulous fundraiser in aid of Rainbow Trust. The Hanover Dairies Diamond Ball at the Gateshead Hilton raised over £30,000. Trevor Hanover and his family have supported Rainbow Trust for a number of years and 2013 was no different. Hanover Dairies threw a fantastic event, which raised more than we ever expected. Guests also had the opportunity to see the work that Rainbow Trust does first hand, when local Mum, Jo Causie, told her emotional story of her daughter, Nina, and how Rainbow Trust had supported them.

Huge thanks to all of you for your fantastic efforts! |3


Your Big Hour: our big thank you! Cake Sale

B

etween 21 and 27 October 2013, Rainbow Trust supporters celebrated the extra hour they got when the clocks went back by using the time to get together and bake delicious cakes to sell to family and friends. Their culinary efforts raised vital funds for the families and children who Rainbow Trust supports. The Big Hour is our biggest annual awareness and fundraising event, and as these fantastic photographs show, you all certainly made the most of those extra 60 minutes and with your help we are thrilled to have raised £30,000. On behalf of the families we help, thank you. We are already looking forward to the Big Hour 2014. G.R. Wright & Sons Ltd is proud to support The Big Hour 2013.

Big hour bakers clockwise from top left: TLC Marketing’s rainbow cupcakes; Decorating cakes at Swindon Care Team’s event; Mollie-Ann bakes a teddy cake for us; Swindon Care Team Event; Cupcakes at a school event; An impressive supporter spread!

Why every hour counts:

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or the families Rainbow Trust supports, every hour really does matter. Here are just a few of the things we spent ours doing. Read more about why every hour counts in our Impact Report

rainbowtrust.org.uk/impactreport

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Here’s what each penny you raised went towards:

882,000 miles driven by Family Support Workers to homes, hospitals, schools and play centres – that’s almost the equivalents to driving to the moon and back twice!

1,368 families supported around the country.

funds an hour of support for an exhausted £22

mother who has been up all night with her sick child


10,749 hours of home support, including emotional support, respite, countless meals cooked, baths run and storybooks read.

provides support to help families cope ÂŁ80 with emotional and practical pressures when attending hospital appointments

6,804 hours of hospital support, helping to organise appointments, explaining illnesses and treatment, looking after siblings and staying with sick children.

3,273 hours of sibling support, maintaining school attendance, arts and crafts, cinema trips, days at the zoo, fun and laughter.

gives an exhausted parent a day’s visit from a £100

Rainbow Trust Family Support Worker giving them someone to talk to and help them cope with the demands of a sick child

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60 seconds with...

a family support volunteer Shelly Duck and threeyear-old Bradley Lowery

S

How do you cope with the difficult situations helly Duck, 39, has been a volunteer you encounter? working with our care team in Durham since December 2012. She talks to us about Nothing prepares you for the first time you go on to the ward and see all of the sick children, it is a devastating sight. But working with children and settling into I am amazed by how much positivity these families display and how strong and determined they are. the post. Why did you choose to volunteer with Rainbow Trust? When I went on to Rainbow Trust’s website to check it out I was overwhelmed by the amazing work being done. Once you started to take on volunteers I grabbed the opportunity to contribute.

What advice would you give to anyone thinking of following in your footsteps and becoming a volunteer? I would say go for it. It has enriched my life, as well as giving me a great feeling of self-worth that I’m making a difference to a family going through such a traumatic time in their life.

What kind of work do you do for the families you support?

You’re one of our newest recruits. How did you find settling into the charity?

I visit hospital wards to enable the families to have a few hours to themselves. Many of the parents are at the hospital 24 hours a day which can be exhausting and very stressful. I also accompany the Family Support Workers with siblings of the children with illnesses as they can often feel overlooked. Having two of us means we can give more attention to each sibling when there is more than one.

The Family Support Workers have been so welcoming. The Durham team is very supportive, approachable and friendly. They are a lovely team and they work very hard. Shelly Duck has since been employed by Rainbow Trust as a Family Support Worker. If you would like to find out more about volunteering alongside our teams of Family Support Workers please contact Andrea Kelley on 01372 220043 or email volunteering@rainbowtrust.org.uk

Today is a very special day M arlene Shirley, our Cumbrian Family Support Worker, lets us into her life working with children and their families as they face serious illness together. Wednesday 24 July 2013 I had a lovely morning spent in Happy Mount Park with four youngsters and their mother, a rare opportunity for them all to be out together and a short time to forget about trips to the hospital. Then it was back down the M6 to see Myles and Hugo. Myles and Hugo were born early at 28 weeks and they have had a lot to overcome in their short lives. Hugo has had major heart surgery and now both of them have been diagnosed with retinoblastoma, which is an uncommon type of eye cancer in children.

Marlene with Chloë

Today, I was with the children’s community nurse to be assessed for my competency in giving Myles his gastrostomy feeds (a surgical opening through the abdomen into the stomach).

received the call at 10pm last night. They had found a match and an ambulance soon arrived to whisk them off to Newcastle, which was 100 miles away. By 5am she was in theatre. I spoke to her mum this afternoon, everything has gone to plan and she is doing well. This family has a long road ahead of them and I will be there to support them along the way. Friday 13 September 2013 It was a very foggy morning as I set off at 6.45am to pick up my team mate, Carol, in Blackburn. We were heading to Manchester for ‘Safeguarding’ training, where we would be joining the Manchester and Durham teams for the day. Rainbow Trust keep all Family Support Workers up to date in areas such as first aid, lone working, food hygiene, and using counselling skills. Friday 20 September 2013 Today is a very special day at Myles and Hugo’s house: it’s Mum and Dad’s fifth wedding anniversary. I went to Preston to look after the children while Darren and Anna went out for lunch. They have had very little time for each other since the twins were born.

Monday 12 August 2013 One of the young girls I support had a successful heart transplant today. Her mum 6|

Find out what happens next at

rainbowtrust.org.uk/marleneblog


Support for all

Events. Are you nutty enough to duck, dive, scramble and slide your way through this 7km adventure race in Surrey? Raise £100 for the Rainbow Trust and you can take part. Find out more:

10 MARCH 2014

Nuts Challenge

Trust in Fashion

28 MAY-1 JUNE 2014

1 MARCH 2014

ant to get involved with our latest fundraising challenge? Make 2014 your year of discovery.

Three Cities Cycle Challenge

Mingle with celebrities and London’s fashion elite for a superstylish afternoon to remember. Tickets £100 each from:

rainbowtrust.org.uk/trustinfashion

16-18 MAY 2014

rainbowtrust.org.uk/nuts

Three Peaks Challenge Scale the three highest peaks of Scotland, England and Wales in one of the UK’s toughest but most popular 24-hour challenges. Registration is £99 and we require sponsorship of £700. Find out more at:

rainbowtrust.org.uk/threepeaks

Calling all cyclists: this scenic challenge will take you from English villages through Dutch lowlands to Amsterdam and finally on to Brussels, covering an impressive 547km in just three days. Register your interest at:

The Whopping Rainbow Run Sign up with your colleagues for a post-work race across Wapping in London, or come along with your family. With a 10k and 5k route, professionally mapped out and flat, this run is for everyone.

JULY 2014

3 JULY 2014

rainbowtrust.org.uk/threecitiescycle

Skydive

We’re challenging you to skydive for charity. Take the plunge with a 10,000ft freefall parachute jump – no experience necessary. Register for just £70 at:

rainbowtrust.org.uk/skydive

Great Wall of China Trek Marvel at one of the Seven Wonders of the Ancient World. This nineday adventure offers the perfect combination of challenge and culture, in a spectacular setting. Registration costs £349 and you’ll need to raise sponsorship of £2,600.

rainbowtrust.org.uk/greatwallofchina

3-12 OCTOBER 2014

rainbowtrust.org.uk/whopping

19-28 SEPTEMBER 2014

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Climb Kilimanjaro Journey up Africa’s highest mountain and experience every ecosystem known to man. Ultimately challenging and totally rewarding, this is 10 days you will never forget. Register by July at:

rainbowtrust.org.uk/kili

Inspired? To view even more events we have going on this year visit: rainbowtrust.org.uk/events |7


Facing the unknown together P

reparing a child for an operation can be a difficult and emotional time, especially for nervous parents, but for the families we work with Rainbow Trust is there to help. When Kellie Vernon’s son Euan, aged four, was diagnosed with a rare form of bone cancer, the treatment he faced was not only invasive and painful, but also frightening. As well as chemotherapy, Kellie had to break the news to her young child that he would need to have an arm amputated to save his life.

Things moved fast, as his doctors decided his best chances of survival depended upon amputation of his affected arm. “The treatment programme starts so very quickly that you don’t have time to think about these things,” says Kellie.

I would recommend that they are as honest as they can be, depending on the child’s level of understanding. I would ask the child what they understand and how they are feeling.

Preparing a child for treatment or a major operation can be very difficult. It is especially tough for younger children, as they struggle to understand what is happening to them and to accept that treatments which may initially make them feel worse could make them better.

“It was horribly distressing and he was very distressed by it. It was a very difficult time,” she explains. “I had to explain it to him because the treatment obviously is quite invasive. It’s not simply chemotherapy; it’s also amputation surgery as well. That’s what he had to have. So it was very difficult to explain what was going to happen and what the future was going to hold.” When Euan was first diagnosed with Ewing Sarcoma – a rare and aggressive form of bone cancer, his consultant gave him six weeks to live. Kellie describes the moment she heard the news: “Everything changes. Your whole world just crumbles in front of you. You’ve got a normal looking, healthy child and you’re being told one of the worst things you can ever be told as a parent.”

What to say to the parents of a sick child T

alking to the parents or family of a child with a serious illness can be nerve-racking and uncomfortable. How do you know what to say? What if you say the wrong thing? Sometimes avoiding the family can seem easier than facing a difficult situation. Jayne Abbott, a Family Support Worker with Rainbow Trust in Swindon, helps families to maintain close contact with their family and friends even in the midst of a crisis. She says it’s common for parents to stop spending time with friends or extended family when a child is ill, even though they need their friends more

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than ever and may need to return to that support network after a child’s death. So it is very important for friends to make the effort to reach out.

There’s no need to worry about saying the ‘right’ thing, it’s just about being there, just having that support system. Let the parent talk without offering advice or anything else. “Try to be positive for the parent,” she suggests. “It’s about listening skills. Let them talk. This will help you to empathise and understand the whole situation that the family finds themselves in.”


Opposite page: Euan Vernon Right: Euan in hospital after the operation; With geologist and broadcaster Professor Iain Stewart

Linda Thompson, Rainbow Trust Family Support Worker, works with families, some of which need to prepare a child for an operation. She advises parents to be open about treatments for serious illnesses. How the tough conversation is approached, depends on a child’s age and ability to understand.

Your whole world just crumbles in front of you. “I would recommend that they are as honest as they can be, depending on the child’s level of understanding. I would ask the child what they understand and how they are feeling.” Linda suggests using toys to explain what is going to happen, such as doctors’ and nurses’ bags, dolls, and arts and crafts, and talking to the child while playing.

Ask the child what they understand and how they are feeling. “As a Family Support Worker, children see me as someone who does fun things,” she says. “I have taken a child out of the home or hospital environment to the park, to discuss their treatment and how they are feeling. I have asked children to write down their feelings and worries or draw pictures, depending on their age and level of understanding.” As for Euan, his treatment was successful and this year he celebrated his 15th birthday. Euan still lives with the consequences of his cancer. Kellie says: “I would say he’s still getting used to the loss of his arm and the treatment left him with some long-term health complications.”

Please help us to be there when families need us most. Every donation you make, no matter how big or small makes a huge difference to the families we support. Simply complete the donation form enclosed or online at

rainbowtrust.org.uk/donate

There’s no need to worry about saying the ‘right’ thing, but Jayne recommends making yourself available to listen whenever a parent or sibling needs it. “It’s just about you being there, and them having that support system. Let the parent talk without offering advice or anything else,” she explains. There are some basic rules about what not to say. Jayne warns against suggesting that you know how a family is feeling, even if you’ve been through something similar, or saying that you know the child will get better. “That’s giving them false hope,” she says. “But if someone knows that there is somebody there, that they can pick the phone up to and have a conversation with on their own terms, this can really help.”

If you have a friend or family member who has a sick child and would like to know more about how to support them, you can find help and advice here: rainbowtrust.org.uk/Family_Services/family_support |9


In memory of Emma W

hen Emma Smart started school in September 2010, Charlie, her mum knew something was wrong. Every few days she seemed to come down with another bug. By December, Emma was losing weight fast. On Boxing Day her family took her to hospital. A blood test immediately identified a serious problem. “Her blood looked more like a weak blackcurrant drink as there were so few blood cells in it.” Charlie explains.

It turns out her heart wasn’t pumping the blood around her body, it was basically pumping cancer, Emma was taken straight to a specialist cancer hospital in Surrey and diagnosed with Acute Myeloid Leukaemia (AML), an aggressive form of the disease. Emma needed intensive chemotherapy to give her the best chance of survival. Emma had five months out of hospital in remission after her chemotherapy, but by September 2011 she had relapsed. “They had told us that Emma’s chance of survival was now

only 25-30%, which I remember thinking wasn’t a great chance at all,” Charlie says. Emma received a bone marrow transplant. On Christmas Eve, a year after diagnosis, her family received the best Christmas present possible: she had started to form her own blood cells. Emma left hospital in February 2012, but a month later she relapsed once again and Charlie found it difficult to cope. “I was doing a lot of the nurse things at home and looking after her constantly.” This is when Rainbow Trust stepped in to help. Steve Boss, a Rainbow Trust Family Support Worker, was assigned to the family, and he introduced family support volunteer Annabel Moseley too. A former midwife and mother of three, Annabel has been volunteering with Rainbow Trust since March 2011, supporting families with sick children for two days a week. In this time she received specialist training and has made a dramatic difference to the Smart Family.

Family Support Worker Steve and family support volunteer Annabel with Amy-Louise and Sam, Emma’s siblings.

Right: xxxxxxx

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Running Header

Clockwise from top left: Emma with her sister Amy-Louise; Ready for a day out; A royal visit, Will and Kate visit Emma on the ward; Princess Emma; Charlie, AmyLouise and Sam.

Before Rainbow Trust it was really hard. I never got a break and had no time out, plus my other children weren’t getting the attention they needed, Annabel and Steve would take Emma’s older sister, AmyLouise, and brother, Sam, out for the day and would also provide emotional support to Charlie. In April 2012, Emma went back into hospital and by the end of the year, her condition was deteriorating fast. “The doctors told me that there was nothing else they could offer her,” Charlie says. “We just fell to pieces.” Emma chose to spend her last days at her local hospital, and was taken there on Christmas Eve. Charlie remembers: “She had a hundred visitors that night, including Annabel. But it was only Annabel that Emma allowed to stay with her. This helped me massively, as it showed how much she trusted her and allowed me out to speak to the visitors.” Emma saw 2013 arrive, but later on New Year’s Day her breathing became unsteady. “She shouted her last words and they were typical of Emma: ‘Stop crying!’ Then I lightly tucked her in, and said what would be the hardest words I would ever have to say: ‘It’s ok baby, you can go now.’ And she did.” After Emma died, Charlie suffered from panic attacks and found it hard to leave the house. With Annabel by her side, she now finds it easier to go out. Annabel says she can see how the support she provides, is essential for families struggling with illness and grief. “I come home from a day supporting the families and feel so positive. Each time I volunteer, I feel like I’m really making a difference. Rainbow Trust fills a huge gap in the lives of the families we support. There’s nothing else in the community that offers this kind of consistent help. The children see the Family Support Workers as playtime, and the parents see them as someone they can confidentially offload to, without judgement.”

That time after the death, life goes on. Friends disappear, go back to work, but Rainbow Trust is still there, keeping some sort of normality.

“Annabel is an amazing lady. She deserves so much credit for coming and visiting us, to spend time with me and the kids,” says Charlie.

We’re only able to help 25% of families who desperately need our support. We urgently need your help to reach more families like Emma’s. Please fill in the donation form enclosed or online at:

rainbowtrust.org.uk/donate

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Leave a lasting memory with a legacy to Rainbow Trust Children’s Charity We know that it’s the small, everyday things that make the biggest difference to how families cope when they have a child with a life threatening or terminal illness. Our Family Support Workers are there to do what it takes, to help families hold everything together. We understand that providing for your loved ones is most important when considering your Will. By remembering Rainbow Trust with a gift you will provide a family going through the hardest time of their life unique, tailored support as they face the unimaginable sadness that their child might die. Why not get in touch for more information and make a lasting difference? For more information please contact Jo Harding on: T: 01372 363438 E: jo.harding@rainbowtrust.org.uk

Head Office 6 Cleeve Court, Cleeve Road, Leatherhead, Surrey KT22 7UD T: 01372 363438

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North East Office Forster House, Forster Business Centre, Finchale Road, Newton Hall, Durham DH1 5HL T: 0191 386 4400 Registered Charity No. 1070532.

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


Rainbow Trust Magazine Spring/Summer 2014