W TRUS T
SPRING/ SUMME R
Celebrating 30 years INSIDE: Alﬁe’s story
At aged two Alﬁe was diagnosed with leukaemia. Read about his story inside.
How can you help us support families in need? Plus: Behind the scenes of our new campaign ‘A day with Amelia’ p10
N O S R A 30 YE Welcome to our 30th Anniversary magazine!
to support a friend with a terminally ill daughter. Now, 30 years on, we proudly support over 2,000 families.
‘A day with Amelia’ on pages 10-11, and hear from Sophie, a mum we support, talking about her son Alﬁe on page six.
I can’t quite believe that 30 years have passed since I ﬁrst stepped into our founder Bernadette’s kitchen as a part-time volunteer. I am immensely proud of how far we have come. Rainbow Trust was born when Bernadette offered
This anniversary edition represents and celebrates the families we support. I hope you enjoy reading about our work and the special pull-out activity pages. You can also read about our new campaign,
Happy reading and thank you for your continued support.
Heather Wood Chief Executive
are delighted to welcome several new celebrity supporters who have helped promote our vital work. We were thrilled when, at Christmas, baking queen Nadiya Hussain (crowned winner of The Great British Bake Oﬀ), chose to support us by donating one of her favourite festive recipes to bake and share with the families we support. It was, of course, completely delicious!
Actress Claire Skinner, known for her role in Outnumbered, helped kick-start our anniversary year by urging the public to support us. The
campaign generated lots of media interest nationwide. Dame Barbara Windsor and TV presenters Natalie Pinkham and Melanie Sykes joined our Ambassador Hugo Taylor at our ﬂagship fashion event, Trust in Fashion, at The Savoy in March. The show featured clothes by renowned designer Amanda Wakeley who was also there in person to meet guests and help us raise over £65,000.
FAMILY NS O I P M A CH
LY C H A M PI
The families we support continue to
inspire us with their strength, courage and fundraising skills. Here is a snapshot of what some of them have been up to:
Eve Trew, grandma to two-year-old Dominic, runs The Eve Trew School of Dance in Gateshead. She had never heard of Rainbow Trust until three years ago when her grandson Dominic was diagnosed with a very rare form of cancer. Since then, her family has received regular support from Rainbow Trust and Eve felt she wanted to give something back. So in February her dance school held a collection after its gala show and raised an incredible £1,024.
Katie and Danny Phillips Matt White, from Parents Katie and Danny Melksham ran the Bath Phillips took to the stage Half Marathon in March at Rainbow Trust’s Corks with his sister Kimberly. and Couture event at The Together they raised over £320. Matthew and Savoy in March and shared his family have ﬁrst-hand their personal story about caring for their son Charlie experience of Rainbow and the help they receive Trust as his 17-yearfrom Rainbow Trust. They old daughter Emily really brought the work of has a life threatening the charity to life for all the degenerative illness. guests attending the event, Matt said, “Rainbow and helped Rainbow Trust Trust’s support enables raise a staggering us to cope – we £290,000 on have many brilliant the night. professionals who are involved in Emily’s life, but our Family Support Worker Jayne is the only one we can truly call a friend.” Want to get involved too? Visit rainbowtrust.org.uk/get-involved
LETâ€™S HEAR IT FOR THE GIRLS! We have supported thousands
of families over our 30 years and are touched to hear how well so many of the children are doing. We wanted to share some of these heartwarming stories. Find us on facebook for more stories facebook.com/RainbowTrust
n e e r G y Emil Christmas 2014 is one that Emily Green and her family, from Wigan, Manchester, will never forget. Out of nowhere, Emily was diagnosed with leukaemia, and spent six months undergoing chemotherapy. She lost her hair twice, but this brave little girl pushed through and responded well to treatment, and by October 2015, was well on her way to being her old self again. She is back at school now and loving it. Sarah, a Manchester Family Support Worker, has supported Emily and Katie, her mum, by taking them to hospital appointments and spending time with Emily at home. This has allowed Katie to do the shopping or just have some time to herself. Katie feels safe leaving Emily with Sarah, as she knows that Sarah will take care of her as well as she would. 4|
Rowan Todd is a 10-year-old girl we have been supporting since she was three years old. She was diagnosed with a brain tumour, which subsequently affected her eyesight, and she now uses a cane to get around. Janet, a
Surrey based Family Support Worker, has supported the family for seven years, helping with hospital visits and Rowanâ€™s siblings. Rowan got the all clear last year, but sadly, the tumour in her foot has come back and the family is waiting to hear what the best plan of treatment is.
d d o T n a Row
Hanna pe Schwep Hanna Schweppe is looking forward to qualifying as a childrenâ€™s nurse in July 2016. This is no mean feat for anyone, but for this young lady, it is fueled with passion and an understanding that her young patients will cherish. Hanna was diagnosed with a tumour in her liver when she was 15. She spent many months in hospital as a patient and was supported by our North East team. They helped her get back into school, and Hanna feels that without their support, she would not have passed her GCSEs. Following her recovery, Hanna chose to give something back by becoming a nurse to the children and young people whose lives will be turned upside down, with the onset of a life threatening illness.
Y R E V E E K A T E “ W Y AS IT COMES DA
Rainbow Trust understands how precious time is for families like Sophie’s - we do as much as we can to help them make special memories and to help keep families strong when under pressure. rainbowtrust.org.uk 6|
Alﬁe Allen was
born with Down’s Syndrome and two holes in his heart. When he was just seven months old, he underwent open heart surgery to repair the holes. He responded well and after a few days in intensive care was allowed home. But, at just two and a half years old, was diagnosed with leukaemia.
was just one year old, Alﬁe relapsed. He got very sick and spent nine months in hospital. By then, dad Matthew had to go back to work. Sophie would come home at weekends to spend time with Frankie and Dennie. Matthew would then spend the weekend at the hospital. “The ﬁrst time, I didn’t ask for help, as I felt I was failing as a parent. Knowing what to expect the second time around, I knew I wouldn’t be able to be the parent I wanted to be without help. I spoke to my social worker and was introduced to Rainbow Trust” says Sophie.
After his heart surgery, life was calm for a while, and then Sophie and Matthew, Alﬁe’s parents, fell pregnant with Frankie. Sadly, when Frankie was six months old, Alﬁe was diagnosed with leukaemia. He started treatment immediately. Trying to juggle a new baby and hospital appointments was so difficult, but the family struggled on.
In 2015, Jessica, a West London based Family Support Worker, began supporting the family.
Alﬁe responded well to treatment and life settled down for the family. A few years later, Sophie gave birth to Dennie, but when Dennie
“To other parents and families in a similar situation, I’d say don’t be afraid to ask because you’re not failing as a parent, you’re actually doing the best thing,
because you’re making life that much easier for your family and for yourself. We feel like a family again, because I can spend time with the other children at home, while Jessica spends time with Alﬁe. “It’s the whole package that makes Rainbow Trust special: it’s not just one thing, it’s everything that they do to support us – nothing is ever too much trouble. We take every day as it comes, and enjoy our brave little soldier, who is an inspiration to us all” says Sophie.
“Jessica came to the hospital and sat with me and Alﬁe and also took us to the park. Having another adult to talk to is really nice. I haven’t felt so alone this time. She always makes a plan to help, even when I call at short notice.
Watch Alﬁe’s video at rainbowtrust.org.uk/Alﬁe
When asked what a Family Support Worker does for a family, people tell us:
“It’s 1001 things I can’t put it into words” Our support is ﬂexible and understanding. We support families however they need. Our Family Support Workers help families cope in extreme situations, so that they do not have to cope alone. Some families are supported several times each week, some call us as and when they feel in need. From support in the home, at hospital, to being there for the whole family if a child dies. We go to families wherever they are.
Some of the 1001 ways we support families: Home support
Even after diagnosis, life at home continues. Children need to be fed and entertained, clothes need to be washed, and for many, work commitments remain. We support families through the ups and downs, to face each day as it comes.
For many families with a terminally ill child, going anywhere can be a big ordeal. Especially if they have to contend with more than one child’s needs, important medical equipment, the risk of infection, traffic and parking. Many families rely on Rainbow Trust for transport to and from hospital, as well as school drop-offs and outings.
of children referred to Rainbow Trust are 10 years or younger 8|
Last year we supported
View our Impact Report online at rainbowtrust.org.uk/our-impact-14-15
Life in hospital
Our Family Support Workers take some of the pressure off families when they are in hospital. Whether it is playing with the sick child and siblings, or attending important appointments with parents, to help absorb difficult information.
For many siblings, the life they once knew is shattered. Routines change frequently, parents can seem distracted, and their emotions can often feel overwhelming. Having someone who helps maintain a routine, makes sure homework is done, hobbies are given time, and siblings are given a safe outlet for their feelings, helps families feel more in control.
No parent expects to outlive their child, but for many of the families we support, this is a real possibility. Our Family Support Workers help families come to terms with a childâ€™s diagnosis, discuss options for end of life care, help families make funeral plans, and support them during bereavement.
5f s8ibling ,9 2 hours o support
new referrals last year |9
‘A day with Amelia’ ﬁlmmaker, Drew Cox, shares his experience, ﬁlming highs, and talks about spending time with families. This month we launched our new campaign ‘A day with Amelia’ asking people to join us and sponsor a Family Support Worker. For the campaign, ﬁlmmaker Drew Cox, created documentary style ﬁlms, giving a glimpse into life for the families we support. “I was very interested in the work Family Support Workers do and the massive differences they make to family life. Not many people think about the challenges and simple day to day aspects of having a terminally ill child. I want to make ﬁlms that inspire and bring light to aspects of life that are so often overlooked.” Drew spent several days ﬁlming with Family Support Worker, Amelia, and here Drew tells us about the sensitivities of ﬁlming, inspiring families, and discovering Hama beads. Drew, what is it like working with children who are seriously ill? It was a very humbling and inspiring experience. They are going through such a difficult and life-changing time, yet they remain so engaged and positive. Their huge smiles just lit up my world. What was the biggest challenge ﬁlming families going through such a diﬃcult time? For me, it was interviewing parents who are obviously going through an emotional rollercoaster. Bringing up memories is such a delicate task. You want to capture their situation whilst remaining compassionate and sensitive to their needs and circumstances. 10|
Did anything funny or unusual happen during ﬁlming? There were lots of funny stories. The public were very confused as to why a cameraman was following families grocery shopping; I slipped and almost fell in the lake; and the young people involved had me in stitches with some very funny stories. I also discovered all about the joys of Hama beads. Were there any special moments? Seeing the strength of families and their fearlessness to face whatever life throws at them inspired me. The connection families have built with their Family Support Worker is extremely touching. They become a part of the family and their presence and support goes beyond just a job. It was a real human connection. Drew’s ﬁlms feature in our new campaign, bringing to life how a sponsor’s support makes a difference to the lives of families. Everyone who signs up as a sponsor will receive an exclusive preview, plus regular updates about our Family Support Workers, photographs and letters from children and families supported.
To sponsor a Rainbow Trust Family Support Worker visit: rainbowtrust.org.uk/Amelia
Join us for ‘A day with Amelia’ Sponsor a Rainbow Trust Family Support Worker like Amelia today and help more children like Hope. Sponsorship starts from as little as £5 a month, which is less than 20p a day. Find out more about Amelia’s Day and sign up today at rainbowtrust.org.uk/Amelia or call 01372 220083.
Some of you may remember Iris who
featured on the cover of our booklet ‘A Guide to Leaving a Gift in your Will’. She was diagnosed with a brain tumour aged just three years old. Five years on, Iris is now a happy, healthy eight-year-old. “Rainbow Trust has been an enormous help and we know that if anything happens or the cancer comes back, they would be there to support us again.” Debra, Iris’s mother Although over half of us give to charity during our lifetime, only seven per cent of us remember a charity in our will. So if you are already committed or you are considering leaving a charitable gift, you are in exclusive company. Remembering Rainbow Trust in your will is a unique opportunity to give the gift of a brighter future to children with a life threatening or terminal illness.
Sadly, despite wonderful medical advances, thousands of families will ask for our care in the future. A legacy bequest made today will mean that we can extend our support to these new families in need. Legacy gifts are an essential part of our income. The money raised through legacies last year enabled Rainbow Trust to fund seven full-time Family Support Workers. By remembering Rainbow Trust in your will, you will provide more Family Support Workers to support more families. Just think of the difference we could make.
Every legacy donation puts us closer to our goal of giving help to every family that needs it, and with it the opportunity to make happy memories that will last forever. To read more about how to give through your will, ask for a copy of ‘A Guide to Leaving a Gift in your Will’ E: jenny-anne.dexter@ rainbowtrust.org.uk T: 01372 220085.
If just 1% of people reading this magazine pledged 1% of their estate to Rainbow Trust in their will it would cover the cost of a Family Support Worker for four whole years. Your 1% could make a huge difference to the lives of families like Iris’s.
VOLUNTEER INTERVIEW Caroline Girgensons Tell us a bit about your volunteering role?
Since February 2011 I have been volunteering as a Holistic Massage Therapist at the fortnightly drop-in sessions for families supported by the Swindon Care Team.
What have you learnt from your regular volunteering?
Volunteering has been a learning curve for me. It has opened my eyes to the huge range of needs of people who have a seriously ill child and has given me the chance to work with a greater range of symptoms, conditions and experiences.
How do the massage sessions help the families you work with?
Most of the family members say how wonderful it is to “switch off” and have some time for themselves. It also relieves aches and tensions they suffer because of sleepless nights and overnight hospital stays. Massage can be very uplifting during these difficult periods of stress.
What do you enjoy most about your volunteering? It’s so good to see a smile at the end of a session and notice how someone’s posture can visibly change.
If you could sum up your volunteering in one sentence what would it be?
Volunteering makes me feel humbled and I feel privileged to work with Rainbow Trust families.
To discuss the skills and time you could offer to help Rainbow Trust support families contact Andrea Kelley on volunteering@ rainbowtrust.org.uk or 01372 220043
M U B L A HOTO
5. 1. Family Support Worker, Francesco, poses for face painting at the Central London Christmas party 2. The Essex team celebrates the opening of its new offices 3. England Football Manager, Roy Hodgson, treats some of the children to a day at Wembley 4. Care teams learn new theatre skills at a Wicked The Musical workshop 5. 9-year-old, Matilda Beasley, shows off her beautiful face painting at the Durham Christmas party 6. Retail
volunteer, Connie Hawkins (left), receives the Mayors Civic Award.
FUNDRAISING HEROES 1.
1. ILC Day 2016 Valentine fundraiser, encouraged companies to wear red, raising over £3,000 2. Hugh Tottenham, from Hampshire raised £12,000 by cycling Land’s End to John O’Groats 3. Generous Jedidiah donated his ﬁfth birthday gifts and raised £60 4. Chris and Paul
Osment raised £2,700 by running the Royal Parks Foundation Half Marathon last October 5. 101-year-old Albert Bennett, has been supporting Rainbow Trust for 20 years, and has raised over £7,000 6. Epsom Methodist Church raised £1,900 from its annual Book Fair.
1. Give up your daily skinny mocha latte for 30 days and donate the pounds and pennies to us – this could fund three hours of support for a family! 2. Feeling adventurous? Take to the skies and skydive in celebration of all of the brave families we support 3. Using double-sided sticky tape create a rainbow and stick on any loose change. Send your ﬁnished rainbow to us to help support more families
Registered Charity No. 1070532.
4. Host a dinner party for friends and family and ask them to donate what they think the meal was worth
support us in our 30th year, here’s our top ten. Find out more at rainbowtrust.org.uk/30-years
5p 1p 5p 10p
p 1p 5
6. Sponsor a Family Support Worker for just £5 a month 7. Indulge your sweet tooth and host a coffee morning at your workplace 8. Dedicate your birthday to Rainbow Trust and ask friends and family to donate the cost of your birthday gift to the families we support 9. Follow us on social media and tell your friends about the great work we do 10. Volunteer an hour a day, week or month to help us reach more families.
5. Run, cycle, climb for us in 2016/17 - get ﬁt and do good at the same time!
BIRTHDAY GIFT @RainbowTrustCC facebook.com/RainbowTrust youtube.com/RainbowTrust
Send us a special 30th anniversary birthday gift! Visit:
There are lots of ways you can
WAYS YEAR H T 0 3 R US IN OU