W TRUS T
AUTUM N/WINT ER 2
INSIDE: Miracle’s story
How our ﬁrst ever Cardiac Support Worker is making a huge difference to families
The Big Hour is back!
How will you use your extra hour this Autumn when the clocks go back?
ME O C L E W Welcome to our second special 30th Anniversary edition where we are looking back over our summer months. In particular, we are sharing wonderful family stories on pages four to seven as well as focusing on our partnership working, which has never been stronger. You can read about our three year Evelina Children’s Heart Organisation (ECHO) partnership on page
10 and some of our corporate partners on page nine. Sometimes partnerships come to an end and, after 28 years with Rainbow Trust and 17 years as Chief Executive, I recently made the diﬃcult decision to retire. Over the years, I have watched the charity grow and change. I am immensely proud that from starting out
In our 30th Anniversary year, our celebrity supporters continue to promote Rainbow Trust and raise funds for families. We were thrilled when our Ambassador and founder of Taylor Morris Eyewear, Hugo Taylor, and Kiss FM DJ Pandora Christie accepted our ‘Jump With Us’ skydive challenge. They jumped 10,000ft from a plane raising more than £1,000.
Patron Austin Healey wrote a poignant Father’s Day letter that featured in the regional press. The exEngland rugby player
in founder Bernadette Cleary’s kitchen supporting a handful of families, we now support more than 2,000 across the country. This is testament to the dedication of supporters like you and long may your support continue. Thank you.
Heather Wood Chief Executive
CELEB P ROUNDU and father of four reminded us that Dads need somewhere to turn as their “world falls apart”. He stressed that Rainbow Trust supports all the family – even the “strong silent dads”. Special thanks also to Rainbow Trust Patron, Lord Julian Fellowes, for hosting our 30th Anniversary celebration in Covent Garden in September. The event included guest speakers, musical entertainment and our first ever Rainbow Trust Recognition Awards.
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 and some of them even use their energy to fundraise for Rainbow Trust. Here are some of their amazing stories.
Emily White from Swindon, turned her 18th birthday party into an incredible fundraiser raising £1,828. Emily has a life threatening brain illness which affects her ability to do things such as swallow, or walk. She dedicated her fundraiser to her Family Support Worker Jayne. Emily said, “I want to give back what Jayne has given to me. Without Jayne, I don’t think I’d be able to live with myself being the way I am.”
James Shears from Surrey, raised an impressive £4,298 running the London Marathon in memory of his daughter, Evie, who was born with cerebral palsy and cancer of the eyes. Supported by Rainbow Trust, the family cared for Evie through her illness. James said, “If that little girl could run marathon after marathon for days in a hospital bed, I can do it for one day.” James wanted to fundraise for Rainbow Trust so that we can continue supporting families just like his.
Matt Davies from Rochdale, hosted a sold-out black tie event in the name of his five-year-old daughter, Scarlett. Matt raised £5,390 for Rainbow Trust after their Family Support Worker, Linda, helped “fill a hole” for his family when his daughter’s undiagnosed illness left her unable to speak or move. The night began with a champagne reception, followed by a four course meal, and an auction that included a signed shirt from Manchester United player, Anthony Martial.
Want to get involved too? Visit rainbowtrust.org.uk/get-involved
WHERE ARE THEY NOW? Erika, Hope and Phoebe This year we launched our new fundraising campaign to sponsor a Family Support Worker, ‘A Day with Amelia’. Three families who feature in the campaign’s powerful films illustrate exactly why Family Support Workers like Amelia are so vital.
ERIKA At 13, Erika struggled with sports and games at school. She thought her breathlessness was asthma but doctors eventually diagnosed her with a condition that increases blood pressure in the vessels taking blood from her heart to her lungs. Sadly, there is no treatment or cure. She is now on a pump 24 hours a day to keep her blood vessels open and her heart pumping. Family Support Worker Amelia, supports Erika, and Rachel, Erika’s mum. Rachel says that Amelia is the person Erika now confides in. She describes Amelia as “the reason why Erika gets up in the morning”.
Erika, soon to be 18 despite being told she wouldn’t live past 14, is now a blogger. She wants to create awareness of what she calls her “invisible disease” to inspire others.
Follow her blog at erika-cestlavie.blogspot.co.uk
HOPE At 12 weeks old, Hope was in a constant epileptic state, having 200 seizures per day. It was only when she reached six months old that doctors diagnosed a chronic genetic disorder. Her seizures became worse and Caroline, Hope’s mum was finding it hard to juggle between caring for Hope and her other two children, Jordan, and Max. This added to the stress the family was already experiencing after their baby, Sam, had died in the previous year when he was just hours old.
Hope’s epilepsy nurse referred the family to Rainbow Trust and Family Support Worker Amelia started regularly supporting them. Hope is now seven and although she is doing well, she still needs 24 hour care. Amelia reads Hope’s favourite stories to her and takes her to the park to feed the ducks. She also helps at home, so mum Caroline can take a much needed break.
E B E O H P When Phoebe was 14 months old, her mum noticed a rash on the back of her legs. A few weeks later, she had a swollen stomach and bruises in her groin. Doctors diagnosed her with leukaemia. Both parents, Aimee and Nathan, had to alternate between caring for Phoebe in hospital, and looking after Phoebe’s three-year-old
brother, Ollie. The strain on the family became too much and nurses referred them to Rainbow Trust. Family Support Worker Amelia helped the family by collecting Ollie after pre-school and playing with him at home. Knowing that Ollie was being cared for took a huge weight off their shoulders and meant Nathan could return to work and Aimee could focus on Phoebe in hospital. Phoebe is now two and the family was very excited when she was recently put onto a maintenance treatment. Receive exclusive updates from Erika, Hope and Phoebe by becoming a regular donor and sponsoring a Family Support Worker rainbowtrust.org.uk/amelia
D TO E S O P P U M I WAS S O R F R E Dad TH Grace’s Darren, PROTEC HING T Y R E V E Rainbow Trust provides families with a dedicated Family Support Worker who offers bespoke support tailored to the whole family’s needs. To help more families like Darren’s, please donate today at:
daughter was diagnosed with a brain tumour before she was two years old, the news was devastating. Leanne, a Family Support Worker from our North East team, supports him and his family.
“Grace was 18 months old when she was diagnosed with a brain tumour. She had been fine up until then. She was one of those children who went straight from crawling to running, so when she started falling over, we thought she was just clumsy. It wasn’t until she was sick at nursery that she was rushed to hospital where they did a brain scan and discovered she had a brain tumour. I was devastated – I was supposed to protect her from everything, but I hadn’t been able to protect her from cancer. “It all happened so quickly – watching her go through the treatment was really hard.
“Fiona, my wife, and I were still trying to take it all in. One of us would stay at the hospital from 9am to 7pm then go home. The other would then stay overnight, so the next morning we were exhausted. “Fiona met one of the North East Family Support Workers from Rainbow Trust at a hospital drop-in group. We were paired with Leanne from the team and she has been supporting us ever since. “Leanne is amazing, she takes Grace out for a couple of hours to the park or soft play. It gives her some fun time and it gives Fiona and me a break. It’s such a help,
decided to be a taxi driver so that I could work around Grace’s treatment schedule. If she or Fiona need me, I can be there. “I would definitely recommend Rainbow Trust and I have. I can’t praise our Family Support Worker Leanne enough for all that she has done for us. She treats Grace like her own.
“I told someone on the ward the other day that the positive out of Grace’s cancer is ﬁnding Leanne and Rainbow Trust.”
“I honestly don’t know where we’d be without Leanne.” “This whole situation has been very hard on us as a family. I was diagnosed with depression, anxiety and stress as it was all just too much. Talking to Leanne is such a helpful release, she listens and the best thing is, she cares. Now I have changed the way I live my life. I live for today and not tomorrow. I Read more rainbowtrust.org.uk/meetdarrensfamily
THE BIG HOUR CHALLENGE IS BACK! 24-30 OCTOBER
WHAT’S ? R U O H AN Manchester-based Family Support Worker, Sarah, supports a family whose four-year-old little girl, Samera, has a complex condition and chronic lung disease. She has a healthy twin sister, Humaira. This is what an hour of Sarah’s support means to their mum, Naheed: • A trip to the park for Humaira to feed the animals so she feels like any other child • Respite for exhausted Naheed and her husband who get up five times a night to check if Samera’s ok • Being there at the hospital when it all gets too much.
When the clocks go back use your extra hour to donate via our website, or organise a fun 60 minute fundraiser. It doesn’t matter what you do or how much you give - it all makes a difference.
Join our annual fundraising challenge, The Big Hour, to help fund a Family Support Worker. U E B IG HO
ARE YOU UP FOR THE CHALLENGE? IN JUST AN HOUR YOU COULD: Charge colleagues to wash their cars in your lunch break Give your colleagues some peace and quiet - sell 60 minutes of your silence D ivide a clock face into minutes and sell them for a £1 each to raise £60 Organise lunch-time Olympics
£24 GIVES A FAMILY AN HOUR OF SUPPORT
Make as many biscuits as you can in an hour, then sell them Share your Big Hour challenge on Facebook and challenge a friend to join you. SIGN UP TODAY
RUST! O’S T H W W O K LOO RAINB G N I T R SUPPO he Jockey Club, the T largest commercial group in British horse racing, has committed its fundraising efforts in 2016/17 to support us.
Fashion retailers, Evans raised £2,744 by selling Christmas gift bags in stores across the country. Thank you Evans!
ymboree Play & Music, G the leading provider of children’s developmental programmes, has raised over £3,700 celebrating its 40th Anniversary.
If your company would like to fundraise for us please call our Corporate Team on 01372 220023 or visit rainbowtrust.org.uk/get-involved/companies
FOCUS ON: PARTNERSHIP In July 2015,
Rainbow Trust began a ground breaking threeyear partnership with Evelina Children’s Heart Organisation (ECHO).
Stephanie from London is one mum whose family is currently being supported by our first Cardiac Support Worker, Diana. Her one-year-old daughter, Miracle, suffers from a serious heart condition, which causes breathing complications and requires her to be on oxygen 24/7.
Rainbow Trust’s first Cardiac Support Worker bridges the gap between the medical cardiac care families receive in hospital, and the support families require when they return home to care for a child with a serious heart condition.
Stephanie was just 20 weeks pregnant when she was told that one of the arteries in Miracle’s heart was not fully developed. Against all odds she was born naturally, however within two weeks, she required constant oxygen.
She then underwent open-heart surgery to close the artery that was still open. The situation was overwhelming for Stephanie, who waited nervously with Miracle’s older siblings, Stephan (8), Ezekiel (3) and Sherray (2). The operation was a success, but Stephanie was told that Miracle would need further surgery later on in life. When being discharged from hospital, nurses introduced Stephanie to Diana, Rainbow Trust’s Cardiac Support Worker, who works in partnership with ECHO.
It makes a big difference having that kind of help, without it, I think my other children would have suffered more.
Stephanie, Miracle’s mum. Diana now supports the family regularly. She takes Stephanie to the hospital when Miracle has appointments and also gives Stephanie support at home with her other children. Stephanie says, “When I am at home, Diana will take Sherray to the park and Ezekiel to nursery. It makes a big difference having that kind of help. Without it, I think my other children would have suffered more. It means I can devote my time to Miracle and not feel guilty, as I know my other children are safe and getting more attention.
“It also means the older ones can still do all the things they enjoy, so they feel less affected by Miracle’s condition.” Despite living a life where medical tests and treatments are the norm, Miracle remains strong and turned one in July. Diana has supported 23 families in her first year and once we have completed a formal evaluation of the first year, we will look at how we might expand the service. Read more about our cardiac support rainbowtrust.org.uk/cardiac-support
TS C A F Y KE 1 Cardiac Support Worker 12 months since we launched the project 23 families supported 85% of children supported are under three years old
1,786 hours of specialist support £42,300 funds a Cardiac Support Worker
BECOME AN AMBASSADOR: LUCINDA’S STORY Since 2011 Lucinda Harris, 27, has worked tirelessly as a Volunteer Ambassador for Rainbow Trust. She volunteers her time to speak at events about the support her family received from Rainbow Trust, after her younger brother was diagnosed with leukaemia when Lucinda was seven years old. Speaking about the role she says: “I feel amazing being an Ambassador for the charity. It’s great talking at different events and I want people to know that they do not have
to cope alone. Rainbow Trust is a support unit for families and I want to give something back. “I would advise anyone to become an Ambassador. You can give your time for free. It is a selfless hobby but it’s also varied and exciting.” To find out more about all of our volunteering roles, contact Andrea Kelley at volunteering@ rainbowtrust.org.uk or 01372 220043. rainbowtrust.org.uk/ volunteer
Rainbow Trust relies on the support of over 400 volunteers who donated over 34,000 hours last year!
SHARE YOUR SKILLS 12|
We are searching for people who have skills and time to share to join the Rainbow Trust team. Whether you are a great organiser, love social media, have a specific skill you can offer, or want to help our care teams, we would love to hear from you. Find out more about how you can help by visiting rainbowtrust.org.uk/ volunteer or contact Andrea Kelley on firstname.lastname@example.org or 01372 220043
INTERVIEW Barbara Keeley MP Barbara is the former Labour Shadow Minister for Care and current MP for Worsley and Eccles South near Manchester. Can you tell us a little bit about your background and how you came into politics?
My early career was in IT working for IBM. I became an MP in 2005 as I felt that too few women were becoming MPs and there were many issues on which policy change was needed.
How did you become aware of Rainbow Trustâ€™s work?
I first became aware of the work of Rainbow Trust earlier this year, when we had a Parliamentary debate on support for children and young people with life threatening illnesses. I talked about the work of Rainbow Trust in Salford in that debate.
What was it like when you met Naheed, a mum whose family is supported by Rainbow Trust?
If you could change one thing for children with life threatening or terminal illnesses and their families, what would it be? I would provide proper funding for the family support provided by organisations like Rainbow Trust.
I was inspired to hear her story as a mum of two young children, one of whom is seriously ill. Our meeting helped me to understand just how important Rainbow Trust is to Naheed and to families like hers. To keep updated, why not subscribe to our enews or follow us on facebook? rainbowtrust.org.ukÂ facebook.com/RainbowTrust
S R A E Y ING 30
T A R B E L CE
1. Siblings had fun dressing-up at the North East Care Team party 2. The Surrey Care Team organised a popular trip to Bocketts Farm on one of the hottest days of the year 3. Nine-yearold Ella at the Essex Care Teamâ€™s Belfairs Park party 4. Southampton families enjoyed Paultons Park 5. Three-year-old Zunairah loved the ball pit at Thames Valley Adventure Playground, for the West London Care Teamâ€™s party 6. Families supported by the Central London Team had a celebration picnic at the Olympic Park.
OUR FUNDRAISING HEROES
1. Hanover Dairies’ Highland Hike raised £15,000 2. Patron Kevin Whitfield raised over £4,000 at his 14th golf day at Matfen Hall in Northumberland 3. Thanks to sponsor GA Telesis we had our own Surrey Hills Cow Parade Cow 4. Estate Agent Cubitt & West is generously sponsoring a Family Support Worker from our Surrey Care Team 5. Gymboree has chosen us as their Charity of the Year in our 30th and its 40th year 6. Supporter Bernard Bunting cycled 100 miles in his
fourth RideLondon event.
7 1 6 1 0 2 EVENTS SIGN up and get involved. There are lots of ways you can help us support more families in our 30th year and beyond. Here is a selection of events, suitable for all tastes and talents. Visit rainbowtrust.org.uk/events to find out more and sign up for your favourite!
10 February, The Works on Paper Fair, Kensington Enjoy a world-class art talk followed by the opportunity to visit this highly regarded art fair.
Various dates, Climb Kilimanjaro, Tanzania If you fancy a challenge further afield why not conquer Kilimanjaro, Africaâ€™s highest mountain? This life-changing 10-day trek follows the breath-taking Machame Route.
12 March, Adidas Silverstone Half Marathon A unique opportunity to run at the home of the British Grand Prix.
29 October, Survival of the Fittest, Manchester A fun, muddy 10km assault course. Have a great time as you duck, dive, climb and crawl through tricky obstacles and pull yourself through muddy pits! 7 December, London Carol Concert, Knightsbridge This magical, candlelit evening of Christmas carols, performances, mulled wine, mince pies and celebrity readers is a favourite in our calendar. Celebrity readers this year include Dame Barbara Windsor, Annabel Croft and Mary Nightingale. Registered Charity No. 1070532.
9 April, Brighton Marathon Enjoy the lively atmosphere around this fast course which winds through the famous seaside city. Along the way take in glorious coastal views accompanied by a host of bands and music.
SIGN UP TODAY! Check out all our events at: rainbowtrust.org.uk/events
@RainbowTrustCC facebook.com/RainbowTrust youtube.com/RainbowTrust