Roald Dahl Specialist Nurses and some of the seriously ill children they support have been illuminated on the iconic Piccadilly Lights screen to celebrate International Nurses Day, highlight the importance of specialist nurses and to launch a Nurses Appeal for Roald Dahl’s Marvellous Children’s Charity.
Roald Dahl's Marvellous Chidren's Charity provides specialist nurses and support to seriously ill children across the UK. It has launched a Nurses Appeal to ensure its network of 78 Roald Dahl Specialist Nurses can continue their vital work caring for seriously ill children while also supporting their fellow NHS workers on the frontline during the Coronavirus pandemic.
The appeal, which is supported by celebrities including Claudia Winkleman, Julie Walters, David Walliams and Tony Robinson, aims to provide urgently needed equipment to monitor seriously ill children at home during the pandemic and to significantly increase the number of seriously ill children the charity reaches by providing more nurses.
About the Roald Dahl Nurses and children who are featured on the Piccadilly Lights Screen (the space on Piccadilly Lightswas kindly donated by Landsec and Ocean):
Sadie (age 4) is a SWAN (Syndromes Without A Name) child which means she doesn’t have a diagnosis. She is under eight health professionals; her gut doesn’t work properly and she is dependent on feeds through a gastrostomy tube. She has problems with her blood sugars and finds it difficult for her to walk. She also has a severe form of eczema. She is cared for by Roald Dahl Specialist SWAN Nurse, Anna Jewitt. Sadie’s mum, Lucy: “Our Roald Dahl Nurse, Anna is a huge advocate for the whole family, not just for Sadie, she just gets it. She takes the pressure off.”
Logan (7) is cared for by Roald Dahl Specialist Rare Disease Nurse, Sarah Rose at Birmingham Children’s Hospital. He has a very rare, undiagnosed genetic condition and is under a total of 14 specialist doctors. He has various heart conditions, scoliosis, hearing loss, hypermobility and a musculoskeletal disorder. Logan’s mum Sophie says: “I can’t put into words how much it means to us having our Roald Dahl Nurse, Sarah. It’s really difficult as a parent to deal with so much and your child can get lost in the system. Before we had Sarah, I was struggling, and I thought no one was listening to me. She keeps us afloat when we were sinking – she keeps us going.”
Will (13) was diagnosed with multiple Cavernous Malformations (Cavernoma) after suffering a haemorrhagic stroke whilst on holiday last April. As a result of the damage from the bleed he was further diagnosed with epilepsy and other neurological issues. His diagnosis has put him on the surgical pathway, and he is undergoing a series of pre-surgical tests before he goes to Surgical Panel with the view for resection (surgery to remove the part of the brain causing the seizures). Will is cared for by Roald Dahl Specialist Epilepsy Nurse, Kat Bottle at Poole Hospital NHS Foundation Trust. Will’s mum, Cherie: “Our Roald Dahl Nurse has been a beacon of light in our darkest of hours.”
Elizabeth Joshua-John: Roald Dahl Specialist Non-Malignant Haematology Nurse at Luton and Dunstable NHS Trust
Emily Bell: Roald Dahl Specialist Epilepsy and Neurology Nurse at Dartford and Gravesham NHS Trust
Lara (10) is cared for by Roald Dahl Specialist SWAN Nurse, Anna Jewitt. Lara has a genetic disorder which has remained undiagnosed. Lara’s growth has been severely affected and she has problems with her bones. She has a curved spine, twisted hips and she lives with acute pain. Lara’s mum, Sema: “Our Roald Dahl Nurse, Anna is always there for us and knowing that makes a huge difference to me.”
Katrina Cousins: Roald Dahl Specialist Neuro-Muscular Nurse at Addenbrookes Hospital in Cambridge with Rosie (13) who suffers from Myasthenia Gravis, is a rare long-term auto-immune condition that causes muscle weakness.
Mason (6) has a rare chromosome deletion 10p21, which was found when Mason was in final stages of heart failure. A life limiting condition, Mason is in a wheelchair, is not able to speak and has learning difficulties. He I cared for by Roald Dahl Specialist Rare Disease Nurse, Sarah Rose. Mason’s mum, Karla: “Our Roald Dahl Nurse, Sarah is always available to contact for her help and support. She is worth her weight in gold.”
Please contribute to Roald Dahl’s Marvellous Children’s Charity Nurses Appeal at www.roalddahl.com/donate