Autumn/Winter 2018

FAMILIES FIRST AUTUMN/WINTER 2018 A mum’s voice “I can talk to Nicki about anything, she helps normalise life for us” Your impact See how your support helps families Radio 4 charity appeal Gyles Brandreth fronts our national radio appeal YOUR He is tube fed, unable “Whenever I come to swallow or to sit up across a struggling SUPPORT unaided and can have family, I always difficulty breathing. mention Rainbow HELPS Trust because they do Family Support Worker, all they can to support Vilja, from the West families,” Hadi was London team, has helped said Hadi’s mum. diagnosed with the whole family in Spinal Muscular coping and coming to Atrophy Type One terms with Hadi’s illness. when he was just Hadi stood for the first eight weeks old. time using a frame in June and saw life from The disease affects all a new perspective. It the muscles in his body helped his family to feel Dear Supporter, because he is missing a optimistic about his protein called SMN. future. I hope you have had the chance have a new office at Cassini Court. It to enjoy the summer – we have is a fantastic collaborative working certainly been busy. The big space and we are all hugely excited excitement for us is that on 10 to be here. It will allow us to work September we moved into our new more flexibly which will help us as McKenzie was diagnosed head office. we continue to deliver a high quality service to families and a better with stage 4 neuroblastoma in October 2011, when he was people don’t understand what it’s For those keen on our Leatherhead supporter experience. like. We felt less isolated with Dawn heritage, don’t panic! Our new office just two years old. and Rainbow Trust’s support.” is about 350 yards behind our old We always love to hear your Mckenzie’s mum one so Leatherhead remains our views so do please email us He had six months of chemotherapy, locale. Why move? Well, although [email protected]. then surgery, then radiotherapy which The family is delighted that McKenzie Cleeve Court had become a little meant having a general anaesthetic has recently celebrated being five tired, the decision was in fact made Thank you for your incredible every day for three weeks. years cancer free. for us by the landlord selling the support. building to a property developer. It McKenzie’s illness affected the whole was time for us to go and we now family and they realised they needed support so they were introduced to Zillah Bingley, CEO Dawn, a Family Support Worker from the Southampton team (pictured right). STAY IN TOUCH “Dawn supported us throughout, she We take your personal data and privacy seriously – to find out more helped us stay optimistic and she also and read our Supporter Promise and Privacy Policy go to rainbowtrust.org.uk helped us emotionally. If one of his older sisters was struggling, I’d ask Call us: 01372 220083 Dawn to come and have a chat with Email us: [email protected] Visit us: rainbowtrust.org.uk her. She understood what we were Follow us: facebook.com/RainbowTrust twitter.com/rainbowtrustcc going through and that is something Head Office address: Cassini Court, Randalls Way, Leatherhead, Surrey KT22 7TW that we really appreciated as most 3 Registered Charity No. 1070532. LATEST NEWS Phoebe has Fanconi Anaemia, a rare genetic disorder. She recently had a bone marrow transplant and luckily her dad Some of the children supported was a perfect match. Here she by our South West team had is on the hospital ward where never seen the sea before...or one of our Family Support been in it! This summer a group Workers from the North East of siblings had a great day out team spends time with her, at Weymouth beach and Sealife allowing her parents to have Centre, giving them a well- a break and spend some time deserved break from the strains with Harriet, Phoebe’s sister. of having a seriously ill brother or sister. Asher is just 12 months old Eight friends took on the and has Multiple Endocrine incredible challenge of climbing Neoplasia Type 2b. This very Mount Snowdon in North Wales. rare condition affects around The ‘Mums up a Mountain’ team 1 in 4 million people and was inspired to fundraise for causes multiple aggressive Rainbow Trust as their friend, tumours throughout the Karena, and her family is currently endocrine system. His Family supported by us. Support Worker from the Essex team helps the whole family with emotional and practical support. Four year old Ian-Drake has There are many different ways of leukaemia. Here he is with raising money to support families. Dexter, his four month old The London International Kayak brother, making cards at the Fishing Festival raised £1,000 drop-in group on the oncology in June. Ian “Dizzyfish” Harris, ward at the Great North said: “We are delighted that we Children’s Hospital. It gave have been able to raise funds for their mother a chance to have Rainbow Trust, which is a truly 4 a break, and chat to other worthy cause, offering support families in a similar situation. to families who are in desperate need of it.” Can you help us provide support to more families by making a donation today? Visit rainbowtrust.org.uk/donate 5 We have three He didn’t sleep, he Having someone there A MUM’S VOICE children, Connor struggled to gain for just us, somebody weight which we who’s independent (11), Esther (7), blamed on the blood. and professional, who and Zachary (1). When he was five understands. Thanks Esther and Zachary months old he was to her, we feel human were diagnosed very poorly and was again. with Diamond admitted into hospital which was when I Blackfan Anaemia “I wouldn’t have contacted Rainbow been able to do (DBA) when they Trust. the hospital visits were born, a bone alone, because my We needed a team; I marrow disorder husband needs to that means their knew we couldn’t do this on our own. My work. Without Nicki, bodies cannot mental health wasn’t we’d have had to produce red great - I hadn’t had any book taxis and I blood cells. sleep. We met Nicki wouldn’t be able from Rainbow Trust and to leave Esther’s Esther had a blood she started coming to bedside or take any transfusion every hospital appointments kind of break.” month for the first year with us. That was of her life – it’s like amazing, but it’s the putting petrol in the emotional support, car, it became normal. being able to chat to She’s profoundly deaf in Nicki, which makes one ear, which naturally such a difference. affects her education Continued overleaf and daily life. For now, she is on steroids daily, which is working but we don’t know how long that will last. It was a huge shock to find out that Zachary also had it. Both my husband and I have been tested and neither of us are carriers, so we were told that Esther having DBA was a one- off. It was a real low point for us. Zachary wasn’t the same as Esther. 6 GYLES BRANDRETH: FRONTS OUR CHARITY APPEAL ON BBC RADIO 4 We are delighted his grandson was Meanwhile Dominic’s to have been diagnosed with an dad was left trying to aggressive cancer cope at home, looking selected to benefit when he was just 18 after their five-year- from BBC Radio months old. old son, who didn’t 4’s Charity Appeal, understand what was which reaches just In the appeal, Gyles happening. under two million talks openly about his personal connection The appeal first listeners each to Rainbow Trust. He broadcasts on Sunday week. also shares the story 30 September at of another family we 7.55am and 9.26pm The well-known writer, have helped, whose and again on Thursday presenter and former mother had to live in 4 October at 3.27pm. MP, Gyles Brandreth, hospital for five months If you miss it, you will be presenting the with Dominic, her can hear it again at appeal for us. Gyles 10-week-old son, while rainbowtrust.org.uk/ knows all too well the he underwent intensive radio4appeal. Nicki does arts and Zachary is in remission Thank you Nicki and positive impact of cancer treatment. crafts with Esther in now, but without Nicki, Rainbow Trust for Rainbow Trust as his hospital – it’s amazing we’d still be really helping me feel human family has benefitted the level of support struggling. It’s been again and helping me from our support after we get from her and an incredibly dark see how we can get knowing it doesn’t just time with Esther’s and through this. If we had end is such a relief. She Zachary’s treatment. a crisis, I know I could knows we don’t know I don’t like to think call on Nicki. I wouldn’t what the future holds about it. want to be without her and we are so very through any of this. grateful for her support. “For us, having Nicki has been fantastic, just having someone there for us. I can talk to Nicki about anything, she helps normalise life for us.” To make a regular donation and help us support more families, visit rainbowtrust.org.uk/sponsor You can choose how often and Listen again at how much – it’s totally up to you.

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