Meet Jessica

Jessica loves to make people laugh. She makes everyone laugh, says her mum, Faye. And she loves animals – caring for pet rabbits and hamsters – and painting, arts and crafts. And she’s now at college training to be a hairdresser.  It seems so far and so good. But this all this belies the toughest of journeys since Jess developed E Coli at just three years old which damaged her kidneys and left her with lifelong bowel and bladder problems. Then, at six, Jessica experienced her first tonic clonic seizure and was diagnosed with epilepsy.   Her mum Faye, who cares for four other children, has subsequently spent a life back and forth to hospitals, monitoring seizures and calling for ambulances when they were too difficult or dangerous to manage at home. Now Jess is moving paediatrics to adult services and learning to live more independently, explains Faye.   “I don’t keep anything from her. I keep her in the loop about everything. To recognise and remember what prevents seizures. To be aware if she’s experiencing symptoms like dizziness and to tell someone or sit down.   “As her parent I find it stressful, wondering how things are going to be different going from a consultant used to dealing with children to an adult centred specialist. I am expected to take a step back – medical letters come in with her name on it not mine – even though Jess will ask me to explain what each one says and means." Meeting their Roald Dahl Nurse The family have known their Roald Dahl Nurse Louise for a few years, and in the last two she’s been pivotal in Jess’s care and transition to adult services.   “Louise is basically my go to. I’d be lost without her,” says Faye.  “I can phone or email her if I need help and support or advice if Jess is having a seizure at home. She’s always there for us. For Jess and for us as a family. She really listens and cares for us and understands the impact Jess’s epilepsy has had – is still having – on us all.   “I really believe that has improved things. Just helping us with the medications I think has helped keep the seizures under control. And Louise helped me secure Jess’s position back at college. We fought tooth and nail to ensure she could go back to her studies.  “And now Jess is moving to adult services Louise has said she won’t stop checking in until she’s settled. I don’t know what we would have done without her support these last 18 months. I don’t know where Jess would be.”  Roald Dahl's Marvellous Children's Charity establishes vital Roald Dahl Nurses, like Louise, in hospitals across the UK. To help fund more Roald Dahl Nurses please donate today at https://www.roalddahlcharity.org/donate/