Alfie lives with refractory epilepsy with tonic-clonic seizures and developmental delay. At times Alfie’s crying and seizures have been continuous for days and his family have really valued how much Roald Dahl Nurse Emma’s support has helped them through their worst times.
Meeting their Roald Dahl Nurse After contracting meningitis when he was 5 months old, Alfie had long seizures which were presumed to be caused by the meningitis. The family had been warned that Alfie could be left with long-term brain damage or develop epilepsy, but it was still a shock when, shortly after, he began having a new type of seizure. After an emergency visit to A&E Alfie was diagnosed as epileptic, but, following discharge with newly prescribed treatment, he began having a huge number of seizures daily. At this point, the hospital introduced Roald Dahl Nurse Emma who has advocated for Alfie and his family ever since while providing emotional support. Support from their Roald Dahl Nurse Following diagnosis, there would be days and nights where Alfie would cry non-stop and exhibit severe behavioural issues which impacted the whole family’s sleep and mental health. Alfie’s older brother also began to struggle with being at home so much of the time, as outings became increasingly rare due to the unpredictability of Alfie’s seizures and behaviour. Mum Gemma shares, “I’ve always got to pre-plan going out by myself because I could be in the middle of nowhere and then Alfie has a seizure and I’m by myself with a 3-year-old, and a 2-year-old who is having a seizure, and nobody to help me”. During this time, Roald Dahl Nurse Emma supported the family in a variety of ways. She connected the family with a local hospice, which now provides weekly respite care for Alfie in his own home or in their centre. This gives the rest of the family much-needed time for daily living activities, which can be challenging while caring for Alfie, and time focused on their older son.
Gemma regularly sends Emma videos of Alfie to get advice on his seizure type and is so grateful that Emma calls her back the same day rather than the difficulty of trying to get hold of a paediatrician or visit A&E. “I can’t say how valuable that is for us, for somebody in a situation you dread every day, knowing I could ring her and she would be there.” Emma often responds to Gemma’s calls by visiting the house to provide emotional support and observe Alfie’s behaviour. “ Emma's been amazing. She has come and sat with us while we just cried on the sofa because we didn’t know what to do with him.” Mum Gemma shared that, in hospital meetings, having Roald Dahl Nurse Emma, a professional who has spent a lot of time with Alfie, advocate for her family has been incredibly helpful. She has changed the dynamic of meetings with specialists who have struggled to believe the severity of Alfie’s condition, having not witnessed it themselves. This has improved the whole family’s quality of life immeasurably. Mum Gemma says, “She’s been here when we’ve cried. She’s been here when we’ve laughed. She’s been here when he had just learnt to walk and he was taking his first steps … really big, momentous times in our lives that we never thought we would actually see. She has got us through the worst of the worst … the emotional support was just amazing”. Donate to Roald Dahl's Marvellous Children's Charity today to help us support more families like Alfie's.