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Shine Winter 2019 magazine New superb sensory walkway Our volunteer survey results Ted and Dylan-James’ stories Therapies Families share the importance of this vital service Shine Winter 2019 Welcome to Shine A message from Highlights inside Our welcome for this edition of Shine is from News Kim, one of our incredible volunteers. She 3 New sensory walkway has volunteered for Shooting Star Children’s 4 George’s Dragons year Hospices for three years. of fundraising 10 Volunteer survey results “I saw an advert for an Open Day at Shooting Star House in Hampton whilst I was unable to Family stories work and went along to find out more about my local children’s hospice. It was incredible 6 Ted’s story to see first-hand the work that went on inside, 12 Dylan-James’ story so I decided to sign up as a volunteer. I mostly volunteer on reception at the charity’s office in Weybridge, covering various reception shifts each week. Feature I’m also a Legacy Ambassador, which involves talking to potential supporters 8 Supporting families about leaving a gift in their will – many people don’t realise that leaving a with therapies legacy to a charity is actually quite simple so I enjoy telling supporters about the process and the difference it makes. Your Shooting Star Children’s Hospices “It’s always a pleasure to read the family stories in Shine and the stories in 11 A day in the life of a... this edition are no different – they really bring home just how vital Shooting Hospice at Home Nurse Star Children’s Hospices is. I hope you enjoy reading them as much as I did.” 14 A look inside... Woodlarks 15 Fabulous fundraisers/ Kim Over to you Care we have provided in the 687 61 last six months Families New families supported 66 same period previous year Figures cover February 2019 688 same period previous year to July 2019. 4,216 1,496 Hours of Hospice Bednights at Home visits 1,728 same period previous year 3,768 same period previous year 2 Sensing a new wonderful walkway The garden of our Guildford hospice, Christopher’s, has welcomed an amazing new sensory walkway for families to experience and enjoy. This has been made possible thanks to the generosity of Hindhead Golf Club, who have chosen us as their charity of the year, and Timotay Playscapes who supplied and fitted it. The walkway has been created to be a Hindhead Ladies Captain, Erica Pickard, bright, vibrant and interactive sensory said, “When Harvie, my fellow Captain, and I outdoor experience. It incorporates a visited Christopher’s, we were overwhelmed range of different textures, colours, sounds by the warmth and total dedication of the and shapes to provide a stimulating staff and the high level of care they provide environment, supporting non-verbal to the children and to their families. It is communication. our hope the sensory walkway will provide families with an experience they can really enjoy together – a colourful, bright and vibrant space, with a range of sensory features around the wheelchair accessible path that will relax, sooth and stimulate.” To donate go to shootingstar.org.uk/donate or call 01932 823100 3 News George’s Dragons roarsome year of fundraising George’s Dragons fantastic year of fundraising began on St George’s Day and will continue all the way to 20th March 2020 – ten years to the day that George and his family’s lives changed for ever. Up until the age of 7, George was living like any other healthy child, until one morning in 2010 when mum Nicky and dad Phil found their son lying in bed awake, but unable to move or talk. Now at 17 years old, George’s condition still remains undiagnosed, quiz nights and a special car treasure with no prognosis, nine years on hunt – all culminating in a grand gala from his first seizure. The family have next year to thank those who have been supported by Shooting Star supported them. Children’s Hospices for seven years with services including short breaks, “Our campaign is about putting Hospice at Home, therapies and Shooting Star Children’s Hospices special experiences for all the family at the forefront of people’s minds to enjoy and create memories. and ensuring they get the funding they desperately need,” says Nicky. “We know that any seizure could take him from us and he is reliant on his “Whatever the future holds for medication to manage his condition, us, dealing with the impact of not treat it,” says Nicky. “We want George’s condition is made bearable to thank an amazing charity who because of Shooting Star Children’s has kept us going in the most Hospices and we simply couldn’t difficult of times. Shooting Star donning her trainers and focusing on function without them. They are the Children’s Hospices has provided some epic running challenges, with greatest support network to anyone respite for George and support for the hope of covering an astounding in our position.” all of the family, keeping us calm 118,000 metres by the end of the and as sane as possible throughout fundraising year. Find out more about George, the years. So we have decided to run his family and how you can help a year of fundraising in aid of them.” In June, Nicky and daughter Mia support and attend one of their took on the challenge of getting up events at georgesdragons.org The family, along with friends, have at 3.30am to successfully complete held events and taken on challenges the Guildford Sunrise Walk. The throughout the year, with mum Nicky family have also organised several 4 News Music to our ears and eyes Sarah Hodkinson and Vicky Kammin, Music Therapists at Shooting Star Children’s Hospices, have written chapters in a new book, Music Therapy in Children and Young People’s Palliative Care, published in August. When a child has a life-limiting condition, communicating with people can be hard. Music therapy gives children an opportunity to communicate in new and profound ways, particularly as many of the children we care for are unable to speak and many struggle to express themselves. Music therapy sessions can provide a safe environment in which the therapist helps a child to find ways to share their feelings. The book brings together music therapists who have worked in the wonderful and rewarding world of children’s end-of-life care. Examining techniques from working just with the breath to technological advances in music therapy, it highlights the benefits music therapy can bring when working alongside children and young people. The chapters written by Sarah and Vicky will help provide music therapists and healthcare practitioners with the tools to reflect on their own professional challenges and deepen their understanding of the important role of music therapy in children’s end-of- life care. Congratulations... to Cara Taylor, Senior Staff Nurse at Shooting Star House, for being awarded the Leukaemia Care Award at the RCN Foundation Impact Awards 2019 – an event aimed at recognising and celebrating excellence in nursing. Cara, you’re a star! To donate go to shootingstar.org.uk/donate or call 01932 823100 5 Ted’s story 6 Family story Following the joy of taking their first child home, Arthur and Amber’s world was turned upside down when Ted was diagnosed with a life-limiting condition. “Having grown up with a big family It was hard in the start for Hallie a lovely place and the nurses and and being surrounded by children, to understand why we come here carers are just so friendly and I knew early on that Ted didn’t seem or what Ted’s problems are, but as willing – they want to help you and to be developing how he should be,” she’s getting older she’s starting they want your children to have the explains Amber. “We took Ted to the to understand. She’s really good best memories.” doctors and he had numerous tests. with him and she takes care of him Eventually Ted was diagnosed with sometimes in her own little way. a condition called Aicardi-Goutieres Christopher’s is the perfect place for syndrome (AGS), which means that her – it’s the perfect place for both of he has brain damage ultimately and them to spend quality time together.” it affects his everyday life – he has a lot of healthcare needs, for instance Amber continues, “We love coming he’s fed via a tube in his stomach, to the family splash sessions in and he’s in a wheelchair.” the hydrotherapy pool – it’s really sensory so Ted can completely relax. Arthur continues, “Ted can’t sit up It gives us an opportunity to spend on his own, he can’t walk or talk, but time together in a safe environment he has his own sounds that we know – both Ted and Hallie always really mean if he’s unhappy or happy. He enjoy themselves. There’s also the To say thank you to Shooting Star needs 24-hour-care from us and has sensory room that Ted spends quite Children’s Hospices, Arthur and medication from when he first wakes a lot of time in when he has respite Amber have started fundraising and up in the morning to when he goes here and the garden, which has over the last few years have raised to bed.” amazing facilities for children in almost £11,000, with Arthur taking wheelchairs – Ted loves going on the part in two London Marathons to The level of care that Ted needs swing.

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