Anaiyah's Story

Meet Anaiyah, an incredible 5-year-old whose sense of fun shines despite the challenges of complex epilepsy, and severe autism. Water is very calming for Anaiyah and her favourite activity is playing with water, taking baths, and doing water activities at school.  The family are still waiting for answers about Anaiyah’s condition; it is still unclear what causes her seizures and why some of her symptoms are deteriorating. The family are determined to get answers and is undergoing genetic testing to shed light on what causes her seizures. 

Anaiyah’s Diagnosis: The family's world was turned upside when they first noticed Anaiyah’s unusual behaviour. She had started to phase out and have absences where she would stare and be unable to respond. Countless tests, including EEGs, revealed spikes of activity in the brain but no seizures were detected, leaving her diagnosis in limbo. Then one evening the family awoke to Anaiyah having a terrifying seizure which lasted for around three hours. Emergency medication was prescribed to manage her seizures, but Anaiyah struggled to swallow it and refused to take it. Without the medication, her seizures continued frequently, and the family found themselves back in the hospital multiple times. 

Meeting Anaiyah's Roald Dahl Nurses The family met their Roald Dahl Nurse for the first time as they were leaving the hospital after receiving Anaiyah’s diagnosis of epilepsy. This was a distressing time for the family. However, their Roald Dahl Nurse was on hand to provide the family with medication support and to ensure they had all the information they needed to manage Anaiyah’s epilepsy at home. Lynn, their Roald Dahl Nurse, continues to provide practical care for the whole family and supports the family by managing and coordinating neurologist and consultant appointments. Mum Rebecca says, “I don't know what I would do without Lynn. I WhatsApp her videos and pictures to ask what things mean with Anaiyah’s behaviour and to monitor her seizures. Lynn can then check them in real-time and advise on the best next steps.”  

Lynn has also worked with the family to create an epilepsy plan for Anaiyah’s school. The epilepsy plan includes vital information to educate the school on what Anaiyah’s seizures look like, how to manage them, how to give medication, and how to handle emergencies. This means Anaiyah can safely attend school, giving Mum Rebecca peace of mind. Emotional Support Lynn also provides the family with the vital emotional support required when caring for a child with lifelong, complex conditions. Rebecca says, “Lynn reduces our stress and anxiety, her knowledge and support have also made us more confident to manage Aniyah’s epilepsy at home. The reassurance of having Lynn’s support has had a huge impact on our whole family. Without Lynn I would feel lost. There are so many what ifs. What happens next time? What if I'm not watching? Having someone to listen, and someone to help fight our battles has been life-changing. Thank you, Lynn. Thank you for being there and for being my voice.” Your donation can help more families receive specialist care and support from a Roald Dahl Nurse. Please donate today and Do Something Marvellous for these brave children and their families.   Donate Today