Rainbow Trust Magazine Autumn/Winter 2013

Magazine

Autumn/Winter 2013

EXCLUSIVE! ’s Your Wright ucher cake mix vo n in this editio

How to make a memory jar

60 seconds with... a Family Support Manager

“I will be there for as long as Kelly needs me” How Rainbow Trust supports families

Join our events! every hour counts

Brothers and sisters: helping them cope

Our pick of Christmas gift ideas

Welcome to the Rainbow Trust Magazine

Welcome I’ve known many families with sick children over the years. While the illnesses have been different and each family handles the situation in their own unique way, the common theme running through them all is that they want the very best for their children – not only the sick child but their brothers and sisters as well.

My little girl has cancer

E

When talking to brothers and sisters it’s clear how lost and uncertain they can feel and how important the time with their Family Support Worker is to them; it is someone to play, to talk and to listen to them. For the parents, our Family Support Workers enable them to spend time both with the sick child and their siblings. As little as ten minutes of support can make a difference to how a mum copes with a medical appointment or with a toddler who is having a tantrum.

As you will see from the stories in this issue, the time that we commit to families allows them to plan and enjoy their lives together. We couldn’t do this without you.

Thank you for your ongoing support.

arlier this year David Bara, whose family is supported by Rainbow Trust, made a direct appeal to supporters to donate money to help the families of children facing a terminal illness.

David’s little girl Adi was diagnosed with a brain tumour in July last year when she was just two years old.

Rushed to hospital for an emergency scan, and then surgery to remove the tumour, Adi and her family quickly had to come to terms with the news that the cancer was aggressive.

Even though all but a tiny piece of the tumour had been removed, doctors could still only give Adi a 35-50 per cent chance of surviving the next five years.

While Adi is at hospital with her mum, David stays at home with her brother Asher, and the days and nights apart are tough on all of them.

It hasn’t been an easy time, but Rainbow Trust continues to support the family.

Thankfully their Family Support Worker Alison is on hand to spend time with Adi and provide practical support such as transport to hospital and help with the school runs, which relieves pressure on the family. David wants to raise money to pay for Family Support Workers like Alison, who make such a difference to families like his.

You can read more of Adi’s story on the family’s blog:

Meet Clare Balding

B

BC broadcaster, Clare Balding gave her support to Rainbow Trust Children’s Charity by hosting our Christmas carol concert. She also spared us some time for a quick interview.

2

If you want to help us to support more families like the Baras please make a donation today:

rainbowtrust.org.uk/ourlittlegirlhascancer

Thank you to everyone who has made a donation to support Adi’s Appeal – the Appeal is still running, please do contribute if you haven’t yet had the chance to do so.

Chief Executive

Clare Balding with Rowan and Petra Todd at Rainbow Trust’s 2012 London carol concert

ourlittlegirlhascancer.blogspot.co.uk

Why did you choose to support Rainbow Trust?

Having met an amazing little girl called Rowan Todd (who was diagnosed with a brain tumour when she was three years old) at last year’s concert I can see what the Family Support Workers do and why it’s a very special charity.

Do you have any fond childhood memories with your family?

Yes lots, in fact I’ve written a book about them! Most of my memories are to do with animals and growing up in a horse racing yard. These days, when I’m not at work, I like to spend time with my nephews and niece.

Last year’s London 2012 Olympics were very exciting. What was your favourite moment?

Probably Bert Le Clos’ reaction to his son Chad beating Michael Phelps in the 200m butterfly. He described it as ‘unbelievable’.

Clare was recently awarded Celebrity Charity Champion at Britain’s Most Admired Charities Award 2013. Congratulations Clare!

Thank you Clare! We are very grateful for your support.

Small actions, big impact

Making memories With autumn approaching, and colder days ahead of us, it can be a challenge to find ways of entertaining children indoors, particularly those coping with the added emotional stress of bereavement or the serious illness of someone close to them.

Children can sometimes find it difficult to talk about a brother or sister who has died. One way to encourage them to express how they feel is to create a memory jar. This simple activity helps children think about happy memories while creating something beautiful to help them remember their brother or sister.

Jake Carr making a memory jar

Joanne Carr‘s five-month-old daughter Jasmine died last year. Joanne recently attended a Rainbow Trust tribute day

in the North East of England with her family, where parents and children made memory jars for their children who had died. “The day was brilliant,” she said.

“The kids absolutely loved it and it helped me to talk about Jasmine and to be open about her, rather than keep how I feel to myself.”

The following instructions create a jar layered with different coloured salt and chalk to trigger different memories. You might prefer to mix the salt with powdered paint instead. You can choose to add objects to the jar that have significant meanings. The end result will be a way of remembering a special person and will allow children an opportunity to communicate their feelings.

How to make your own memory jar: 1.

Gather together a glass jar with a lid, a pen, salt, coloured chalks, felt tip pens and six sheets of A4 paper

2.

3.

4.

Carefully fill the jar with salt and place to one side

5.

On a piece of paper write down any five things you remember about the person who died

Draw a dot of colour next to each memory (for example, blue for their favourite song, pink for a time you did something fun together)

Spread out five sheets of paper and split the salt from the jar between them

6.

Colour each pile of salt one of the colours of the dots by rubbing a piece of chalk forward and backwards over the salt, which will take on the colour of the chalk

7.

8.

Carefully pour each pile of salt into the jar one at a time to create layers

9.

Gently tap the jar to settle the salt then fill up any remaining space with plain salt to prevent the layers mixing

Put your jar somewhere you will see it often and keep your memory sheet safe so you can show it to friends and family.

The gift that gives twice

T

he run-up to Christmas can be a busy time of year; finding presents that our loved ones will like, thinking about all the food that needs to be prepared and trying to make sure it will be a fun and happy time for everyone. This year, why not take some of the stress out of it by shopping from our Christmas catalogue?

Rainbow Trust offers a selection of beautiful charity Christmas cards and crackers as well as gifts that really make a difference.

A range of gift cards are on offer that will suit all budgets. For example, £20 will buy a family the gift of time by paying for an hour’s help from a Family Support Worker. Or for just £10 you can bring a smile to the face of a seriously ill child and their brothers and sisters by purchasing an arts and crafts session. Each item comes with a gift card so you can add your own special message if the present is for someone else.

Rainbow Trust’s Christmas catalogue features cards, crackers and Rainbow Trust gifts that will have a positive impact on the lives of the families Rainbow Trust supports at this emotional and stressful time. Your copy is enclosed with this magazine or you can visit our website at:

rainbowtrust.org.uk/shop

3

Sibling special

Brotherly and sisterly

love

R

ainbow Trust recently launched a project that provides additional support to siblings of children with life threatening illnesses.

When a child is diagnosed with a life threatening or terminal illness it affects the whole family. While parents can struggle with their own feelings of grief, shock, anger and confusion, siblings may retreat into themselves and find it difficult to talk about their emotions.

They sometimes need dedicated support to help them cope, in addition to the services that our Family Support Workers already provide.

Therefore, Rainbow Trust has developed a new bespoke support service for siblings called ‘Me Too!’, to enhance our existing sibling support service. Funded by the Big Lottery Fund, the initiative helps siblings of very sick children lead as normal a life as possible by providing dedicated emotional, social and practical support for them.

For example, siblings often have to spend a lot of time with babysitters while parents attend hospital appointments. This can be difficult for them and their parents, as the Brown family experienced after baby Mitchell was diagnosed with cancer; “Leon (Mitchell’s older brother) used to get left with lots of different friends all the time, especially if I had to stay late at the hospital, which wasn’t very good for him,” says Katie, his mum.

Both Leon and Mitchell adore Sabrina. They get very excited when she comes to the door,

The type of service offered through the Me Too! project varies depending on the needs of the child. While for younger siblings it can be about needing someone to play with them and look after them, for older siblings it can mean focusing more on emotional support.

One teenager who knows just how hard it can be when a sibling is unwell is 18-year-old Sophie Forbes. Her younger brother Andrew was diagnosed with a brain tumour when he was 12.

However, all that changed when Katie was introduced to Family Support Worker Sabrina who spent time with Leon while Katie was busy dealing with appointments and caring for Mitchell.

“Both Leon and Mitchell adore Sabrina.

They get very excited when she comes to the door,” says Katie. “I wish we had known about her from the start. It would have made life a lot easier.”

Mitchell and Leon with Sabrina

How to... help a sibling cope

C

hoice of language and allowing siblings to be involved are key to helping them deal with the fact their brother or sister is very ill, says Sibling Support Worker Annalie Ashwell.

The world in which a child lives is very different to that of an adult and varies greatly from age to age. Under sevens for example, tend to fantasise and use their imaginations much more than older children, while teenagers are responding to the emotional and physical changes that are taking place within them.

4

Clearly they have quite specific needs that have to be taken into account should a sibling be diagnosed with a life threatening or terminal illness.

“Having a very sick brother or sister can have a huge impact on a child,” says Annalie. “They can be vulnerable to depression, anger, guilt and social isolation as a result of the huge changes that take place in the family.”

“Often the sibling has to act a lot older than their age by trying to be the strong one,” she adds. “They might want to look after their brother or sister or they may feel they are missing out on all the attention. Every child responds differently.”

Family matters “We are very close,” says Sophie. “Some people say they have never seen a brother or sister closer. I would always talk to him if he was sad or anything.”

She is just really nice to be around. She has just got a really friendly atmosphere about her. It’s just nice to see a friendly face, “It was weird as I didn’t expect anything like the brain tumour to happen. It was upsetting, but we mainly laughed about it.

That may sound weird. They say if you don’t laugh you cry.

We normally made jokes to get through it,” she says.

Andrew and Sophie were also supported by Sabrina who would take them out and give them time away from their parents.

Sophie and Andrew Forbes

“She is just really nice to be around. She has just got a really friendly atmosphere about her. It’s just nice to see a friendly face,” says Sophie. “I would talk to my friends about Andrew’s illness. But I could also talk to Sabrina.”

By giving siblings the opportunity to relax and talk about the aspects of life that they are not coping with or do not understand it can help rebuild their confidence and reassure them it is ok to have fun again.

Volunteering - do you have spare time?

Rainbow Trust will support a child for as long it is needed; services do not stop if a brother or sister dies.

We need more people for our growing team of volunteers, to work alongside our Family Support Workers who provide support to families.

If you would like to join the team or find out more about other volunteer opportunities please contact Andrea Kelley on: T: 01372 220043 or E: volunteering@rainbowtrust.org.uk

The ‘Me Too!’ initiative is funded by the Big Lottery Fund

If you would like to help fund more sibling support please make a donation today rainbowtrust.org.uk/donate Research has shown that a sibling’s response depends on how much they are told.

“A lot of parents are worried about telling their children too much, or that they won’t understand because they’re too young,” says Annalie. “This can actually mean they struggle more.”

“It can be difficult to talk to siblings about what is going on, but they will usually come up with an answer of their own if they are not told, which could actually be worse,” says Annalie. She also advises against saying things like ‘your brother/sister is special’ which can be very confusing.

Siblings also need to understand the illness isn’t their fault. “Make sure they know they won’t catch it like a cold,” says Annalie. “If the child has a genetically inherited disease that might also affect a brother or sister it’s important that parents don’t shy away from talking about this. Parents should gather information and support from doctors and health professionals as to when and if they should talk about this to the sibling.”

The most important thing is to answer all the questions. “If the child wants advice make sure you answer in a way they will understand,” says Annalie.

“Remember, although they might not react to difficult news it doesn’t mean they don’t care. Children express themselves in different ways.”

Our Family Support Workers are skilled in helping families work through these important situations.

Tips for helping siblings cope Make sure you understand what a child is asking you (clarify understanding with them) Explain what is happening in a way they will understand Reassure them the illness is not their fault Allow them to be involved.

5

Isla’s Story

I

sla Holliday had a rare genetic illness that resulted in her death at just four years old.

Rainbow Trust supported the family from diagnosis and will continue to do so for as long as they need it.

“Isla could smile but her condition severely restricted her mobility,” says her mother Kelly. “She couldn’t walk or talk but she smiled and giggled when she was happy, which was most of the time.”

Isla was born with a rare genetic disorder called Schinzel Giedion Syndrome, which causes neurological problems, bone and organ abnormalities and facial disfigurement. She was diagnosed at three months, and Kelly and her husband Phil were told her life expectancy was likely to be just two years.

“She needed 24/7 care,” says Kelly. “I left my accountancy job and dedicated my life to ensuring that she had a normal childhood.

I never allowed her condition to stop us doing anything such as parties, caravan holidays, swimming, theme parks, etc.”

Isla needed four types of drugs, four times a day and suffered from seizures and numerous infections. “We were very protective of her,” says Kelly. “I was trained to look after Isla at home, instead of taking her in and out of hospital – which I didn’t want.”

Rainbow Trust began supporting Kelly and her family in 2009.

“I first met the family in May 2009 after they were referred to us by the children’s community nurse,” says Family Support Worker Marlene Shirley who is part of the charity’s Cumbria team.

Marlene provided a lot of emotional support for Kelly. “Having me visit the family home gave Kelly the chance to talk about issues she couldn’t discuss with her family because it was all too raw,” says Marlene. “The emotional side of it was a big thing. While Rainbow Trust can’t change a situation we do make it easier.”

Isla with Kelly, her mum

Kelly had an incredibly strong bond with Isla and wanted to be with her as much as possible. However, because of her illness, Isla couldn’t be left on her own. “Kelly had great support from her family, but every now and again she would need a break or to catch up with other things that needed to be done around the home. I would help with this by looking after Isla while Kelly had a bath or made phone calls,” says Marlene.

For Kelly, the support was invaluable. “Throughout Isla’s life and death I could trust our Family Support Worker to be there to help us, whenever and however we needed her,” she says.

Isla died on 1 November 2012. “I got a phone call from the children’s community nurse telling me that Isla had died and I spoke to the family over the phone almost immediately,” says Marlene. “I attended her funeral and have been supporting them since. I speak to them on the phone and visit them at home.”

Marlene also helped the family create memory boxes for Isla’s younger brother Isaac and the rest of the family. Memory boxes are a wonderful way to pass on memories of treasured times to families and siblings. Each has a special cover to store a cherished photo and inside there is space for keepsakes, like tickets and jewellery that hold precious memories.

Throughout Isla’s life and death I could trust our Family Support Worker to be there to help us.

Marlene continues to support Kelly and her family to this day. “I will be there as long as Kelly needs me,” she says. “Everybody’s grieving process is totally different. When the family is ready we usually find the need for our support comes to a natural close.”

Isla and Phil, her dad

6

Kelly’s husband, Phil, is an engineer and often works away for long periods. At these times, Marlene is on hand to give Kelly extra support if she needs it. “Kelly is a very sociable person and has lots of friends who help her. However, it can be difficult speaking to her friends about Isla’s condition as they were very emotionally attached to Isla, just as her family was. It can be easier to speak with me about it because I am someone who knew Isla, knows Kelly and her family, but Kelly doesn’t have to be strong for me,” says Marlene.

Support for all

60 seconds with... a Family Support Manager

Isla

Family Support Manager Claire Bickley explains how Rainbow Trust’s new Central London Care team helps families in the local community.

Despite her sadness and sense of loss, Kelly is determined to do something to help other families in similar situations and has started a year-long programme of fundraising for Rainbow Trust called Isla’s Fund. “There are approximately 52 families in Cumbria helped by Rainbow Trust and every week more children are diagnosed in our region. Their families would benefit from Rainbow Trust’s support,” she says. “My aim is to help raise awareness and to support the charity to help other families like ours.”

What’s your role?

My aim is to raise awareness and to support the charity to help other families like ours.

There’s myself, a Family Support Worker, Notis, a Sibling Support Worker, Annalie and a volunteer, Vicky, we couldn’t manage without her. The team works well and supports each other. We hope to increase staff as funding allows.

Team Isla consists of friends and family who are holding numerous fundraising events throughout the year culminating with a charity ball on 1 November 2013, the anniversary of the day Isla died.

How do you help families?

Fundraising events include: The Workington to Keswick Walk; the Virgin London Marathon; 24-hour Spinathon; Coast to Coast cycle ride; a golf day; Manchester 10km run; Ride UK 24-hour bike ride; Skydive and BUPA Great North Run. To the end of June, the fund has raised up to £14,000 with more coming in on a regular basis.

“My life has changed dramatically since Isla died,” says Kelly. “I’m so proud to be the mother to such an inspirational little girl – Isla touched so many people’s lives. It’s so hard to move on, but doing all this charity work is helping me to focus on something positive and to help other families.”

Giving in Memory A Forever There Tribute Fund, like Isla’s Fund, is the perfect way to bring together friends and family to help a cause close to their heart and to celebrate the life of their loved one. They are easy to create and you can contribute whenever and in whatever way you wish.

For more information, please call us on 01372 363438 or email jo.harding@rainbowtrust.org.uk.

I’m the Family Support Manager for the new Central London Care team. We cover Tower Hamlets, Hackney, Islington, City, Westminster, Kensington & Chelsea, Hammersmith & Fulham. The team was set up in early 2013 after research showed this area was home to a number of children with life threatening illnesses all of whom would benefit from Rainbow Trust’s support.

How many people are in your team?

The support depends on the situation. If a family is spending lots of time in hospital we can help out with practical needs, such as transport services, and playing with the ill child and siblings in hospital so that parents can take a short break. We can also provide emotional support for the whole family.

How many families do you support?

We already support 27 families, but with referrals from consultants, social workers and therapists every week we will soon support 50 families a year.

How were you able to start a new team?

Thanks to our two-year corporate partnership with Nomura we have been able to establish the new Central London team, to enable us to deliver more services in an area of great need.

What are the long-term goals for family support in Central London?

We want to work closely with the London hospitals to provide the best support we can for families, both in hospital and also when families get back home. As part of our work with siblings we will be running regular fun days and therapy groups. We will also be holding regular parent support groups to help support all of the family’s emotional needs.

7

Events

Rainbow Trust has a whole host of exciting events lined up for the next twelve months. Whether you want to get fit running half marathons or cycling to Paris, or prefer to spend your time at evening concerts and dinners, there’s something for everyone.

Saturday 19 October: The Whole Foods Market Women Only Run

The full list of events can be found at:

rainbowtrust.org.uk/get_involved/fundraising_and_events

Join other female supporters for this 5K or 10K Women’s Only Run in the stunning surroundings of Richmond Park, London.

16–18 May 2014: Three Peaks Challenge

rainbowtrust.org.uk/womenonlyfunrun

Take on Ben Nevis, Scafell Pike and Snowdon – a total of almost 3,000 metres, in 24-hours. It’s a tough challenge including a night climb. Do you have what it takes?

Thursday 5 December: Christmas Carol Concert Celebrate Christmas in the beautiful St Paul’s Church, Knightsbridge, London.

Enjoy a mince pie and glass of mulled wine together with carols, performances and seasonal readings from celebrities including Les Misérables star Eddie Redmayne.

rainbowtrust.org.uk/threepeaks

rainbowtrust.org.uk/londoncarolconcert

21–27 r Octobe 3 1 20

Every hour counts

50p off

The Big Hour celebrates the extra hour we all get when the clocks go back, and highlights just how precious time is for the families we support.

The Big Hour cake sale, sponsored by G.R. Wright & Sons Ltd, is our biggest fundraising and awareness event of the year and will raise desperately needed funds for our work.

next purchase of any variety of Wright’s cake mix in support of Rainbow Trust’s The Big Hour Cake Sale.

TO THE CUSTOMER: This coupon can be used in part payment for any Wright’s cake mix only. Only one coupon can be used per item purchased and cannot be used in conjunction with any other offer. Please do not attempt to redeem this coupon against any other product as refusal to accept may cause embarrassment and delay at checkout. Invalid if photocopied or printed from internet.

Valid until: 30 / 11 / 2013

TO THE RETAILER: This coupon is valid in part payment for Wright’s cake mixes only and is redeemable through Valassis Ltd., PO Box 6199 Nuneaton CV11 9HQ.

Head Office 6 Cleeve Court, Cleeve Road, Leatherhead, Surrey KT22 7UD T: 01372 363438 North East Office Forster House, Forster Business Centre, Finchale Road, Newton Hall, Durham DH1 5HL T: 0191 386 4400

8

Photography: Andy Newbold Pictured on front cover: Jamie-Leigh Carr

Join in one of the nation’s biggest cake sales to help raise vital funds for Rainbow Trust.

North West Office Unit 443, Chambers Business Centre, Chapel Road, Oldham OL8 4QQ T: 0161 336 4767 E: enquiries@rainbowtrust.org.uk W: rainbowtrust.org.uk Twitter: @RainbowTrustCC Facebook: facebook.com/RainbowTrust Registered Charity No. 1070532.

You can bake your own favourite recipes, try a celebrity recipe or if you’re short of time why not use this coupon and try a fabulous Wright’s cake mix? To find out more, get loads of inspiring recipe ideas and to sign up visit: thebighour.org.uk