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Celebrating-Rare-Disease-Day Supporter Newsletter Issue 5 - March 2016 Get-in-touch Marvellous-Nurse-Inventing- A-Day-in-the-Life-of-a- Space-Station-Builder Sam is seven and a half years old and he’s no ordinary boy. Sam is currently building a AsRoom part of our marvellous- partnership–-Voice with the Burdett -ofFaith- said,the “It’s a really-child welcome addition to Sophie’s care. space station which is rather marvellous and even more remarkable when you realise Trust for Nursing, we have been working with The Jessie Having the communication passport has given us the that Sam has as many as 20 seizures a day and up to 60 a week. May Trust: a charity that provides free hospice at home peace of mind that those caring for Sophie will also be care to families of terminally-ill children living in the South able to interpret those nonverbal cues. It has given us the News West of England. confidence to take true respite, safe in the knowledge Marvellous that Sophie is in the very best of care. Her needs and Whether you want to fundraise, The Voice of the Child project aims to capture and understand health change constantly and so the passport is a vital donate, apply for our help or ask the needs of children that are unable to communicate tool for helping Sophie’s carers to understand those us a question, get in touch with verbally using a ‘Communication Passport’. It’s a simple, changing needs day-to-day.” our team on the contact details paper-based tool that allows healthcare professionals to CelebratingThe 29th February was Rare Disease-Rare Day and to- celebrateDisease this rarest of- days,Day we below. communicate behaviours, likes and dislikes of the children brought together children and their families affected by rare diseases at Birmingham they work with in their own ‘voice’ and accompanies the child wherever they go. This enables increased Children's Hospital. Our two, new, rare diseases specialist Roald Dahl nurses Sian understanding of a child’s individual and non-verbal cues, Bicker and Kate Penny-Thomas were welcomed on the day. Charity President, which ensures their safety, comfort and happiness. Felicity Dahl also joined the ‘Marvellous Superstar Club’ event. The project has been adapted from a version first created by NHS Scotland, and highlights how important research The day consisted of exciting activities for children including a event such as today really brings children and their families and knowledge-sharing is across the UK. It is hoped that sensory bus, a music room and lots of arts and crafts including closer together and enables them to feel supported. It has Sam was diagnosed with epilepsy two years ago when he was five, but there were the findings from the project can benefit many more a graffiti wall. It was an opportunity for children and their also been fantastic to meet some of the other Roald Dahl signs that all was not well when he was only three. Early on, Sam was treated for seriously ill children and their families in other parts of the families to connect with one another, receive support and have Nurses which makes me feel part of a nursing community.” nasal congestion, but when the diagnosis was eventually confirmed, it was a scary country. The project has also meant that all of the Jessie some fun. There was a guest appearance from our very own time for his family. His mum, Becky, remembers the first time Sam had a bad seizure: Rena and her 9 year old son May Trust nursing staff have been trained to use the Marvin and bundles of supporters including Busy Bees, who Illyas thoroughly enjoyed Communication Passport, so that all of the 96 children on ”I was very scared, because he lost the feeling down one side of his body and have been raising money for us as their charity of the year. the day. Rena said, “I’m so the trust’s caseload can benefit. had some kind of palsy in his face. He was unable to talk properly and his facial Sian Bicker, one of our marvellous new nurses said, “I am so happy I came here today Don’t forget to follow us on expressions had changed. We didn’t know what was wrong and, as a parent, Liz Lewington, the project lead said, “The Communication happy to be a part of the Roald Dahl Nursing family. An and so happy I met the Twitter @RoaldDahlFund your natural instinct is to want to protect and make sure your child is safe Passport offers the best way of understanding each specialist and Roald Dahl’s and like our Facebook page and secure.” Marvellous Children’s child’s needs and we’re really excited to share the results facebook.com/roalddahlcharity with other health care providers in the UK". Sam’s mum says without their Roald Dahl Nurse, Lilly, the family wouldn’t manage as Charity.” well as they do. Lilly is someone she can have a bit of a laugh with, as well as having Faith (pictured) is mum to her daughter Sophie who can’t Children with rare illnesses her there to give emotional support and to use her specialist nursing knowledge of communicate verbally and has benefited hugely from the Roald Dahl’s can often be overlooked and Marvellous managing complex cases of epilepsy like Sam’s. Communication Passport. Children’s Charity lost in the system. Being seriously ill can be frightening for children, particularly when Montague House you don’t know what’s happening to you. It can be lonely 23 Woodside Road and children can feel like they are missing out on what other Amersham children get up to. The event was a great way for families to Buckinghamshire come together and share their experiences. HP6 6AA. Tel: 01494 890465 [email protected] www.roalddahlcharity.org More Marvellous We are especially proud to support the project in the West Registered Charity No: 1137409 News... Country, where Roald Dahl spent much of his own childhood. Company Limited by Guarantee in England & Wales No: 7340518 The Communication passport has already helped improve the Illustrations © Quentin Blake happiness and wellbeing of many children in the area, and we Roald Dahl is a registered trademark look forward to sharing the project more widely in the future. of Roald Dahl Nominee Ltd www.roalddahlcharity.org www.roalddahlcharity.org www.roalddahlcharity.org A big THANK YOU to all our... Did-you-know? A-National-Centre-of-Excellence End-of-Busy-Bees-Charity-of-the-Year-� We are pleased to announce that the neuromuscular team to mark the DiaryIt’s going to be- aDates marvellous year paediatric neuromuscular department at marvellous achievement at Addenbrooke’s Family Grants for centenary celebrations – Addenbrooke’s Hospital, Cambridge has hospital. Jo said, “I think it is fantastic marking 100 years of Roald Dahl. been awarded recognition as a national that Addenbrooke’s neuromuscular Lastpartnership year, we were delighted to be-celebrated the Charity of the Year for 82 Our Family Grants provide families centre of excellence by Muscular service has been recognised for the Busy Bees Nurseries in South East England. The nurseries promptly Fantastic-Fundraisers Join the celebrations for Roald who care for a seriously ill child Dystrophy UK. excellent care it provides children and got busy, throwing themselves into a variety of fundraising activities Dahl 100, with lots of squiffling with financial support. Grants families in the Eastern Region. I look ranging from creating Enormous Crocodiles in classrooms, to surprises, there’s an event for of up to £500 are available to The prestigious award recognises the after many families that would entering an entire team of staff into the British 10k and a very Run-Jerry-Run! everyone! families to help improve their Mark Oxtoby, aka Jerry from Charlie outstanding care for people at struggle to travel to such specialist brave lady undertaking a bungee jump in Austria! emotional or psychological and the Chocolate Factory – The Roald Dahl 100 Addenbrooke’s with muscular dystrophy services further away - it’s brilliant wellbeing. In the last six months, Everyone’s enthusiastic efforts at Busy Bees raised an astounding New Musical is running the London Join the biggest, best and most and related neuromuscular conditions. they can receive great care more we provided families with a £33,534.51, exceeding all of our expectations. Marathon in April. As a father, Mark fantabulous Roald Dahl party! The hospital was assessed by a panel of locally.” marvellous 42 grants, totalling experts and the service provided is now says, “The work of the charity Save the Date – join the Roald Dahl We are extremely grateful to all the staff, children and parents £17,955.00. only one of ten neuromuscular centres This is a fantastic achievement for resonates deeply with me and I Party, featuring the Dahlicious at Busy Bees Nurseries for their fantastic and generous support. in the UK that meets the award’s Addenbrooke’s, where we currently want to be able to do everything I Dress Up Day on 13th September. Social Workers or Healthcare specialist criteria. have three Roald Dahl Nurses in post. can to make a difference.” It’s Mark’s Schools across the country will professionals apply on behalf of third London Marathon and yet he’s be joining in the fun, by getting families and the grant can help Roald Dahl Children’s Nurse Jo Musson working hard to ensure he trains with Theatre Royal, Drury Lane in London’s dressed up as their favourite Roald with support, which includes (pictured) joined other members of the fundraising efforts to match.
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