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INSIDE:
Katie’s story
“I’m excited for Christmas this year, being together for the day will be magical”
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Giving back
See how families are giving back to Rainbow Trust
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WELCOME to this edition of our magazine!
The first half of the year was a hive of activity, with more families than ever supported by our nine care teams. In the last 12 months, we helped over 1,900 families, which is nearly a third of those who might benefit from our services.
However, we continue to strive to reach the other 4,000 families in need of our support. With just 3 percent of our income coming from public funding, the unwavering commitment from families, supporters and amazing partners is more important than ever. I hope you enjoy reading about some of the inspiring ways people
have fundraised for us and maybe you’ll feel motivated to take up a challenge yourself. I had my head shaved (shown above), it was so liberating and it raised over £8,500.
Heather Wood Chief Executive
We are so grateful for the
CELEB WATCH
support of our famous friends, here is what they have been up to. Made in Chelsea star Hugo Taylor is now an official Ambassador for Rainbow Trust. We are incredibly grateful for all the work he has done for us so far, including completing the Virgin Money London Marathon, in April. We look forward to working with him in the years to come. England rugby legend Austin Healey hosted an exclusive rugby event, ‘Inside the World Cup’ in September. Guests 2|
joined Austin for a pre World Cup Q&A session before indulging in a three-course dinner and a silent auction. The evening raised an incredible £17,000. This Father’s Day, actor Rupert Penry-Jones backed our ‘Don’t forget Dad’ campaign which honoured all dads with a life threatened or terminally ill child and encouraged people to support Rainbow Trust so we can help more families.
FAMILY SERS I A R D N FU Amongst our amazing fundraisers are some of the families we have supported who have chosen to raise money to help us reach more families in need.
Ruth Sanderson, from Stanley, County Durham, completed her second Great North Run in September in memory of her grandson Cameron Lee North, who died in 2004 at just 13 weeks old. Rainbow Trust supported her family throughout. Thank you for your continued support Ruth.
Michael Binnersley, from Liling near York and Chris Richardson from Hovingham, wanted to give something back after we supported Michael’s son, Daniel, 19 years ago when he became ill and died aged one year old. Over the years, the Binnersley family and their friends have taken part in various fundraising activities, including the Monte Carlo or Bust Rally which Michael completed in June. He raised over £3,100 – thank you Michael.
Will Todd, his wife, Beth and their family from Guildford, Surrey, have been supported by Rainbow Trust for the last five years. Their nine year old daughter Rowan was diagnosed with Neurofibromatosis Type 1, a condition that causes tumours to grow along the nerves. Will, a composer, has held many events in aid of Rainbow Trust, including most recently, a mass performance of his renowned Mass in Blue and A Concert for Rowan. This year alone the family has helped us raise over £20,000 with more than 1,100 people turning out to support his events. |3
TIME IS PRECIOUS, MAKE IT COUNT… ‘The Big Hour’ is back. We are
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challenging you to use the power of your extra hour when the clocks go back on 25 October, to raise vital funds for families with a seriously ill child.
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For many people, when the clocks go back, it means an extra hour in bed. But for those caring for a seriously ill child, that seemingly throwaway hour is incredibly precious. From 19-25 October, we are calling on people to support The Big Hour by using their extra hour to raise money and make memories, all while making a difference.
Get your family, friends or colleagues involved to raise money for Rainbow Trust’s vital cause. You could hold a bake sale, an office happy-hour or any other fundraising activity that lasts just 60 minutes. Groups across the country including offices, schools and golf clubs are taking part, putting their extra hour to good use. Please share your ideas with us #BigHour
Rainbow Trust Ambassador, Hugo Taylor, is supporting this year’s The Big Hour and will be hosting a dinner for his friends and asking for donations. He said:
“An hour is such a small amount of time to commit but can make a big difference if we all put just a small amount of effort in. I aim to raise as much as I can at my dinner party, and would encourage you to get creative and take on the challenge with me!” 4|
FOR P U U O ARE Y GE? N E L L A THE CH An hour of your time is all it takes to raise enough to help a family who is in need, and we want as many people as possible to take part.
SIGN UP TO GET INVOLVED
Why not use your extra hour to host a: Teddy bear’s picnic Sponsored spelling bee at school Office bake sale Golf competition with friends Rainbow-themed coffee morning.
thebighour.org.uk
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E F I L E K A T T S U ” “I J Y A D Y DAY B
d by upporte ry s d a d his sto Mark, a , shares t s u r T Rainbow
Rainbow Trust helps the whole family and offers bespoke support tailored to a family’s needs. To help us reach more families like Mark’s, please make a donation at: L-R: Jamie, Mark, Luke and Charlie 6|
rainbowtrust.org.uk/donate
When Lucy and
I found out she was pregnant with Luke, our third child, I struggled to come to terms with it. For me, having our two boys was the perfect scenario and I didn’t want to change anything.
Luke was born in 2008 and spent his first year in and out of hospital. When he was one, he had a gastrostomy tube inserted, so he could be fed directly into his stomach. Out in public people would stare while I poured milk down the tube - which I hated. I struggled to come to terms with having a sick child, and it affected my feelings towards Luke. I felt like I didn’t spend enough time with him, as I looked after his brothers, Charlie and Jamie. I realise that my emotional switch off was a coping mechanism. Watching Lucy shoulder the pressure of spending every day in hospital, and missing out on time with our other two sons, made me realise that things needed to change. So I started helping out with his care and hospital visits, to help me bond with Luke, and give Charlie and Jamie more time with their mum. When Luke was diagnosed with a degenerative disease and bone marrow disorder, he needed a bone marrow transplant. Jamie was a perfect match, despite being very scared, he braved the blood tests and operation. Things went extremely well and both boys are making good progress.
Luke’s an amazing little boy. The thought of losing him is not something I can contemplate, but it is something I will have to face within my lifetime. I’d heard Rainbow Trust mentioned in the hospital, so decided to get in touch. Nicki, a Surrey Family Support Worker, was assigned and helps by taking Lucy and Luke to the hospital when I can’t get time off work. She plays with Jamie and Charlie to give them a break from Luke’s illness, and takes them to a siblings group, so they can meet with other siblings who understand their situation. Her support has taken so much stress out of an already difficult situation, and has meant that my family can maintain some kind of normality.
“I don’t think too much about the future. Instead, I take life day by day – Lucy, my three boys and me, is what counts, and I’m thankful for that.” The difference Rainbow Trust’s support has made to my family, has spurred me on to help others. Earlier this year, I ran the Fleet Half Marathon and raised £3,275. It feels great to know I have helped other families.
Read more of Mark’s story at rainbowtrust.org.uk |7
COVER STORY
“I’M EXCITED FOR CHRISTMAS THIS YEAR”
Read Katie’s story
When twins,
Charlie and Louis were born, Charlie “didn’t look normal,” says mum, Katie. Charlie struggled to breathe and feed at the same time, so wasn’t getting enough oxygen, which caused his skin to look grey. Katie and her husband, Danny, took Charlie back and forth to the hospital. At three months old, a Consultant Neurologist confirmed something wasn’t right, and admitted him to hospital. Charlie had many tests, but he is yet to be diagnosed with a specific condition. He is fed through a nasal tube, and at one year old, he missed important development milestones and can only just raise his head and move on his own. Charlie was in hospital for five long months and Katie stayed with him while Danny looked after Louis and Jacob, their six year old son. It was hard for the boys to be separated from each other as they couldn’t 8|
always visit the ward. Mum and dad tried hard to maintain a bond between the boys. Charlie wasn’t able to be at home for Christmas last year as he was too unwell, so Katie left him late on Christmas Eve to be with Jacob, and Charlie’s twin brother Louis.
“It was awful leaving, I left a stocking on the end of his cot and went home.” On Christmas morning, the family drove to the hospital to be with Charlie. “It didn’t feel like Christmas, we tried to make it special, but it just didn’t feel right” says Katie. After that very difficult first Christmas apart, Charlie’s community nurse recommended Rainbow Trust to Katie. Dawn, a Southampton Family Support Worker, started visiting the family two or three times a week. She spent time with Jacob whose world had been, “tipped upside down,”
with the arrival of two new babies, and his mum absent at the hospital for months on end. Dawn gave Jacob time away from home and, “made him feel special again,” says Katie. She collected Jacob from school, and looked after Louis while Katie went to hospital appointments with Charlie. This meant she didn’t have to entertain three small children while talking to doctors, and could concentrate on what was being said. “Dawn just slotted in, I don’t need to treat her like a visitor. I trust her with my children, and especially Charlie who needs more support,” says Katie.
“I’m excited for Christmas this year, being together for the day will be magical, just how it should be,” says Katie. Top to bottom: Katie with twins Louis and Charlie; Charlie; Dawn with Louis, Charlie and Jacob.
GIVE A S I H T T F I G S A M T S I CHR A donat io Rainbow n to T Christm rust this as will h el us supp ort mor p e families in need .
Christmas can be a particularly difficult time of year for families who might face Christmas apart, or away from home. A gift of just ÂŁ30 this Christmas will enable us to reach more families in need.
Visit rainbowtrust.org.uk or call 01372 220086 to make a donation.
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FOCUS ON: NEONATAL CARE It’s been almost a
year since the launch of our pilot neonatal service at the Chelsea and Westminster Hospital in London. The last 11 months has revealed the extent to which this service is needed. Our nine care teams support families with a baby on a neonatal unit across England. This pilot provides more targeted support for families, tailored to the needs of families caring for a baby with very specific needs. THE PILOT HAS SUPPORTED
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FAMILIES IN A YEAR
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Zia was one of the children supported by our Cumbria team. Zia was born 10 weeks early, and weighed just 2.3lbs, the same as a bag of sugar. She was admitted to her local neonatal unit and was put on a ventilator to assist her breathing. Zia was very unwell, she had six blood transfusions, chronic lung disease and was later diagnosed with a hole in her heart, as well as having a genetic disorder.
Dawn and Matt, her partner, also have a nine year old son Rhys.
“In the neonatal unit, it’s like being in a bubble. That’s all there is,” remembers Dawn, her mum.
Dawn struggled to bond with Zia at first, as she was so ill and she didn’t feel confident taking care of her. Marlene spent time with Zia in the neonatal unit and supported Dawn emotionally. This gave her the space to talk
“It felt safe, but the thought of bringing her home, scared me.”
Dawn heard about Rainbow Trust and knew she needed help so she got in touch with us. After an assessment, the team in Cumbria offered her support and Marlene, one of our Family Support Workers, visited the family at their home and talked about how she could make things easier.
about her fears and helped her find her confidence to look after Zia. “I found it so hard, I wanted to put Zia into care as I didn’t think I could cope. Having Marlene there to help me believe in myself, made all the difference,” says Dawn.
“I can’t put into words how much she has helped me.”
and Zia to the Cumbria team’s drop-in group so Dawn can meet other families in similar situations. This gives her a chance to talk about what she’s going through, with people who understand.
“I don’t know where I’d be without Rainbow Trust and Marlene. If I need help, I know I can call them.”
Below: Zia spent five months on the neonatal unit Below left: Photo credit: Chelsea and Westminster Hospital
Zia spent five long months on the neonatal unit. When she was discharged, Marlene drove Dawn and Zia home, so that Matt could collect Rhys from school. It was important for the family to have some sense of normality. Marlene also takes Dawn
Neonatal units specialise in babies born early, with low weight or who require specialised medical treatment
TS C A F Y KE 85% of those in need come from areas in which Rainbow Trust already operates
Neonatal is defined as the first four weeks of a baby’s life in intensive care
At Chelsea and Westminster Hospital, 10% of deliveries are admitted to their NICU in full totalling up to 600 each year
There are 2,205 babies in England in need of palliative care services
NICU care costs the NHS £1,000 per day |11
Eight years ago when a
colleague mentioned Rainbow Trust to Christian McBride, he chose to support us - impressed by the service we offered to families in crisis. So when Christian and his partner Laura’s six month old son, Liam, fell ill in 2009 with a rare bone marrow disorder, they knew immediately where to find the support their family would need. “We had to watch our bundle of joy undergo transfusion after transfusion, not knowing if he’d live or die,” remembers Christian. It was a frightening and lonely place for the family, so
Christian, Laura and his company, Genuine Solution’s, support for Rainbow Trust continues. They have run and cycled their way to raise a staggering £50,075.99, and this year, they aim to raise another £10.000 through similar events. Christian also mentors Rainbow Trust staff and uses his professional network to support Rainbow Trust, so that other families can receive the same care he and his family benefitted from.
“having Surrey Family Support Worker, Lyn, and Rainbow Trust there to support us, made such a difference.”
“I just want to give back and raise awareness, because I know first-hand, about how fantastic Rainbow Trust’s support is and that there is no other organisation that does what they do.”
Liam had to go through a long and complex treatment programme, but is now in remission – a happy and healthy little six year old.
GIVING 12|
BACK
Above: Christian and Partner Laura during the Nuts Challenge, pictured with sons Oliver and Liam
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2016 m ark Rainbow s 30 years sin ce T support rust first start e ing fam ilies in n d Bernad eed. ette Cle ary refl how it a ects on ll began ...
Rainbow Trust
began when Bernadette Cleary was asked to help the family of a dying child. “I was asked for help by a close friend whose neighbour’s 12-year-old daughter, Rachel, had terminal cancer and wished to die at home, not in a hospital. I was there to offer support and comfort mother and daughter as Rachel made her final journey. After Rachel died, word got out. Within months, I had more requests for help than I could ever cover on my own, but I travelled across the country, trying to help as many families as I could. In 1986 Rainbow Trust was registered as a charity and operated
from a shed, at the bottom of my garden. I raised every penny needed to fund the first Family Support Workers. It’s amazing to know we now have 53 Family Support Workers helping almost 2,000 families.”
“Our vision remains that one day soon, all families who could benefit from our support, should have access to a Rainbow Trust carer. But without more money, this won’t be possible.”
How can you help? Take on a challenge in 2016 (see the back page) Host an event in your community and raise £30 Donate money in lieu of birthday gifts in 2016 Sacrifice your morning cup of coffee for 30 days and donate the savings to Rainbow Trust Organise a bake sale at work, sponsored silence or BBQ.
Above: Bernadette Cleary is awarded her OBE in 2006 |13
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1. On the beach at the Essex Remembrance Day. 2. Family Support Worker Sarah and Alex at the Essex Remembrance Day. 3. Pam, one of our Southampton Family Support Workers, with siblings on Siblings Day at Staunton Country Park. 4. Caitlin at the West London team’s gym day. 5. Shelly, Family Support Worker from Durham with children at their Siblings Day. 6. Alfie making cupcakes in hospital when Jess, his Family Support Worker, came to visit. 14|
FUNDRAISING HEROES
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SHARE YOUR SKILLS
1. Supporter Donna Dyer and her committee raised over £4,500 with “North Hampshire’s Little Gems” a concierge-style book recommending local businesses. 2. Plus sized retailer, Evans raised £8,500 to date through its STYLE HAS NO SIZE campaign. 3. Andy and Leslie Hoy from Colchester, Essex raised £600 when they asked their wedding guests to donate to Rainbow Trust instead of buying a gift. 4. Imogen Dale, 11 from Surrey held a collection at her youth choir raising over £300.
Rainbow Trust relies on the support of over 400 volunteers who donated over 34,000 hours last year! 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 or fashion, have a specific skill you can offer, or just want to be part of a growing team, we would love to welcome you. Find out more about how you can help by visiting rainbowtrust.org.uk/jobs or contact Andrea Kelley on volunteering@rainbowtrust.org.uk or 01372 220043
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TIM E F I 6 L 1 0 A 2 F O E G N CHALLE Join our team for memories to cherish forever!
Rainbow Trust provides specialist support to families coping with the care of a life threatened or terminally ill child. There are lots of different things you can do to raise money and help us continue our vital work. Sign up for one of our fabulous events; there’s even more choice on our website: rainbowtrust.
org.uk/events
Skydive Any date
Registered Charity No. 1070532.
Take the plunge with a 10,000ft tandem skydive. Wherever you live in the UK, there’s an airfield near you where an adrenaline-fuelled opportunity awaits.
“The adrenaline rush was amazing. Skydiving for Rainbow Trust meant I achieved something great for others as well as myself.” Tom, skydiver
London to Paris Cycle Ride 20-24 July 2016 Join the cycle revolution! This rich and inspiring experience ends in the heart of Paris for the finale of the Tour de France 2016. You’ll be totally supported by an experienced crew throughout your adventure.
Experience the challenge of lifetime! Stimulate your mind, awareness and abilities, leave your car keys and phone behind, and set yourself free on a testing but meaningful experience. We have two wondrous treks, one overseas and one closer to home, both on various dates throughout 2016: Classic Three Peaks Challenge Climb Kilimanjaro
SIGN UP TODAY! We’ll support you every step of your amazing journey. Visit: rainbowtrust.org.uk/events
@RainbowTrustCC facebook.com/RainbowTrust youtube.com/RainbowTrust