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A Story of Love and Hope DISCOVER The Dame Vera Lynn Children’s Charity Newsletter SUMMER 2020 edition A story Cyrus of love and hope Few of us can imagine the sheer emotional shock that turned a couple’s excitement about the anticipated safe arrival of their second child into every parents’ nightmare. Cyrus and Dad Cyrus seated That was exactly what happened to parents Thomas and Sumi, who were on a short break when their second son Cyrus was suddenly and traumatically born at just 26 weeks. their extraordinary family. Determined that both their sons should have fulfilling childhoods, Cyrus’s parents spent hours Terribly vulnerable in his prematurity, Cyrus was just a few days searching for answers to the question ‘How can we best help old, receiving specialist care miles from the family home when Cyrus?’ who was still so vulnerable, in pain and facing a very he suffered a series of severe haemorrhages affecting his lungs uncertain future. and brain. There was a real chance that he would not pull through. Help came by chance, a friend heard about Dame Vera Lynn Children’s Charity. Soon Cyrus was visiting the Charity’s Centre Thomas and Sumi were asked to make the heartrending in Sussex. Their professional support became a lifeline. It was decision to stop Cyrus’s life support. the family’s sanctuary, enabling Cyrus to go on an amazing But Thomas and Sumi would not let Cyrus go. As they watched journey of therapies and care that transformed his and all their their tiny second son, they made a life defining decision. lives. They would support Cyrus in his fight, whatever it took. They Two years on from those life changing experiences, Cyrus resolved that no matter what was ahead, the uncertainty, the continues to make wonderful progress. Gaining physical challenges, if Cyrus was holding on, they’d be there too, right strength and some movement, he loves life, a lively two year alongside him. old with a fantastic vocabulary, there is every reason to expect And hang on Cyrus did! Four different hospitals, months he will attend mainstream school and lead an independent life. of intensive care and critical life support followed, with The family have a network of other similar families, supportive complications including cerebral palsy, hydrocephalus and friends who enable them to balance a normal family life with a later meningitis. unique one of supporting Cyrus. So many times it seemed Cyrus was teetering on a precipice. The Charity has provided them with the strength, courage and But each time, he hung on to life and fought his way back. resilience to embrace Cyrus’ challenging tiny world and guide him through it. Dame Vera came to the world’s attention in an Finally, miraculously, he was home. That first year was a roller age of fear, chaos and trauma. She personified that ability to coaster of emotion, care and love There was grief for the life rise above those dark days and give real hope to others. Thomas and Sumi had expected for their second son. There was sadness at missing his older brother’s first steps and his That spirit exists today in the Charity she founded and that transformation from baby into robust toddler while with Cyrus still carries her name. For Thomas, Sumi, and Cyrus that in hospital. But there was so much joy for the gift of spirit of optimism and determination shapes their every day. www.dvlcc.org.uk Charity Reg No. 1089657 We’ve ‘kept smiling though’ during the ‘lockdown’ When the COVID-19 pandemic hit in March, we all had to find new ways to do things. For families of children with disabilities, these months have been very tough. The children we work with are often vulnerable and in line with Government guidelines we had to suspend our face-to-face services for children Harrison (3) following Istvan’s session at home on 17th March. But we were determined to make sure that the children and their families had the all help they needed, whilst staying safe at home. Istvan and Beata have been available to answer any specific We have set up 1-1 virtual Conductive Education sessions for questions from parents via video or lifeline, offering them families via zoom. Istvan, our Paediatric Physiotherapist and stability at a time when everything else has changed. We’ve Beata our Conductor, have been working with parents online. really enjoyed receiving some lovely messages and photos They have guided them through exercises and activities that from them as we’ve really missed having the children at the the children can work on at home. Centre – it’s been very quiet indeed! “Beata and I had to adapt our plans and learn quickly about what equipment people had at home. We started to use things The online sessions that we are doing with Istvan like cooking books for steps and wooden spoons for sticks to are helpful in so many ways. It helps keep some reach and hold. We have been so pleased to be able to continue consistency in our week when everything else is to work with families as we miss seeing them so much. It’s been so different and this is something Matthew really amazing to see how much they have grown and changed over the thrives on. I feel that I have ongoing support which lockdown period!” said Istvan for me is invaluable. The activities and ideas Istvan gives us are very useful and we are able to carry The children all have individual learning goals which they are them on through the week which makes us feel that working towards each session but the team make sure that we are still doing something structured to help there are plenty of play activities, games, songs and craft Matthew’s progress.” sessions too. Having fun is so important. Getting ready to welcome the children back… We are hoping that we will re-open our doors to children and families in September. We can’t wait to see them all. We know how much the families are looking forward to our Music Therapy, Swimming, Home play and Speech Language sessions. These make such a difference to the children. Making sure we keep everyone safe is our top priority so we are introducing smaller groups, putting in place new cleaning procedures and making sure we’ve assessed all the risks and putting in place measures to mitigate them. Mille (4) concentrating hard For a small charity like ours, these additional costs are really Liam and Lily (4) on her online session stretching our budget so if you are in a position to help, we’d learning and having fun so appreciate it. www.dvlcc.org.uk A Sad Farewell to our beloved President, Dame Vera Lynn CH DBE OStJ Everyone involved with Dame Vera Lynn Children’s Charity was deeply saddened to learn of the death of our wonderful President, Dame Vera Lynn CH DBE OStJ, who passed way in June, aged 103. We’ve received so many tributes to her from families, supporters, service men and women and the public. All wanted to acknowledge the remarkable contribution she made and how much she meant to them. Sir Captain Tom Moore, who recently raised £33m for NHS charities, tweeted: “She had a huge impact on me in Burma and remained important to me throughout my life.” The inspiration and hope she gave the British Troops and public in the 40’s was more than matched by the hope and inspiration she gave to families of children with cerebral palsy. Her determination to help these children led to the founding of our charity and she continued to play a very active role in our work. We will miss her greatly and her legacy will live on in the lives of the children, whose courage, determination and spirit are a permanent reminder of Dame Vera’s own qualities. A special message from Virginia Lewis-Jones, Such sad news, we attended with our daughter in Dame Vera’s daughter and Vice President of 1993, it was a life-saver. Dame Vera Lynn’s Children Charity. We went for weekly sessions for nearly 2 and a half years and met many lovely people, including Dame “My mother first became involved in raising Vera Lynn. awareness of cerebral palsy in the ’50s when there Our daughter is now a teacher herself and this was very little understanding of the condition. would not have been possible without this charity. She set out to change people’s attitudes and help Thank you.” these children reach their full potential. Dame Vera Jane Wescott Lynn Children’s Charity always held a very special place in her heart. The children loved her as much I remember meeting Dame Vera when I was as she loved them, and I’m extremely proud of three and attended sessions at Dame Vera Lynn what the Charity has achieved and the difference it Children’s Charity – such a gracious lady who did has made to so many families’ lives. so much good work.” It means so much to us as a Livvy Breen, Paralympian family to know that my mother’s hopes for these children, now and in the years to come can be realised thanks to the help and generosity of people like you who make it possible for the vital work the Charity do to continue. Thank you for your support.” Charity Reg No. 1089657 The Fundraising team at Dame Vera Lynn Children’ Charity are back at our Centre in Cuckfield and planning our calendar of events for the coming months.
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