To raise awareness for International Epilepsy Day, Pauline has shared the story of her daughter Sadie’s journey to a diagnosis of epilepsy….
Our journey began in February 2023 when Sadie, following a throat infection and a course of antibiotics, collapsed one evening.
We were away for the night in Wexford when Sadie experienced what we later learned was a seizure. At the time, we didn’t know what was happening; we thought she might be choking. Confused and terrified, we called 999.
The ambulance took about 40 minutes to arrive. During that time, the 999-operator stayed on the line, guiding us through what to do and ensuring Sadie was breathing. It was an incredibly frightening experience. By the time the ambulance arrived, Sadie was beginning to come around. She was taken to Waterford Hospital, but the ordeal was far from over.
Within hours of arriving at the hospital, Sadie had another massive seizure, and her entire body broke out in a severe rash. This was a terrifying moment for us as parents. The doctors quickly intubated her to stabilize her condition and informed us she needed to be transferred to the ICU at Crumlin Children’s Hospital in Dublin. An ambulance transported Sadie to Crumlin, while my husband and I followed. Our nine-year-old son had to stay with a friend in Wexford while we rushed to be by her side in Dublin.
The next two months were some of the most challenging of our lives. Sadie spent nearly five weeks in intensive care at Crumlin as doctors ran every possible test to determine what was causing her seizures, she was having multiple seizures a day. She was intubated, heavily sedated, and on several medications to try to control the seizures. We felt helpless as we watched our little girl endure so much without knowing what was wrong.
After weeks of tests and different treatments, Sadie was diagnosed with seronegative autoimmune encephalitis, triggered by the throat infection. With immunotherapy and medication, she slowly began to recover. By April, she was well enough to be discharged, though she remained on several anti-seizure medications. It was a relief to bring her home, but her recovery journey was just beginning.
Over the summer of 2023, Sadie gradually regained her strength and returned to herself. Her school was incredibly supportive, and by September, she was fully back in the classroom. As her condition stabilized, her neurologists began to slowly reduce her medications. By January 2024, she was down to just one anti-seizure medication. We were hopeful.
However, in March 2024, Sadie had another seizure as she was going to bed. This time, she was readmitted to Crumlin, where she had a few more seizures over the following days. Thankfully, the doctors ruled out a recurrence of autoimmune encephalitis but confirmed that Sadie was now living with epilepsy. This was a new chapter in her journey.
Managing her epilepsy has been a challenging process. Over the summer of 2024, we trialled different medications to find the right combination. Some caused side effects, requiring slow weaning and careful adjustments.
As of now, Sadie is on three anti-seizure medications, one of which is still being gradually increased. Despite this, she continues to have seizures every two to three weeks. These are tonic-clonic seizures, often occurring as she falls asleep or wakes up. They typically last several minutes and require rescue medication in most cases to bring them under control. We’ve had to call an ambulance countless times, and the journey has been exhausting for all of us.
Despite everything, Sadie remains an incredible little girl. She takes her medications without complaint, even though some taste unpleasant. She faces her condition with resilience and determination, living her life to the fullest. She loves school, participates in GAA, and enjoys after-school activities.
Our hope is that with time and the right medication mix, Sadie will achieve seizure freedom. We want her to enjoy the simple joys of childhood—sleepovers, swimming, and other activities that many take for granted. While we’re not there yet, we remain optimistic. We’re deeply grateful to the doctors and nurses at Crumlin, who have been amazing throughout this journey, and to the teachers, friends and family who continue to support us. Epilepsy Ireland has been a fantastic support for us as we try figure out the world of epilepsy. Sadie loves participating in Get ChARTy where she can meet other kids facing the same challenges.
Sadie’s story is a reminder of the resilience of children and the strength of families facing epilepsy. We’re sharing this story to raise awareness and to offer hope to others navigating similar challenges.
We look forward to the day when Sadie can live seizure-free.
Thank you, Pauline, for sharing your and Sadie’s story for International Epilepsy Day 2025. Find out how you can share your story by visiting the 'International Epilepsy Day' page on our website.
Further Information
- To learn more about Get ChARTy and our Young Epilepsy Programme, visit the ‘Our Services’ section of our website
- If you are a parent/guardian of a child diagnosed with epilepsy and need any information or support regarding the condition - please do not hesitate to get in touch with your local Community Resource Officer. You can find their details by visiting the 'Our Local Services' section of our website.