On October 24th, my daughter Ellie experienced a sudden tonic-clonic seizure while getting ready for school. It was completely unexpected and terrifying; we genuinely thought we were losing our beautiful girl. We immediately called 999. When the paramedics arrived, Ellie regained consciousness, and we were rushed to the hospital.

At the hospital, they conducted blood tests, an ECG, and checked all her vital signs, which came back normal. The A&E doctor explained that this could potentially be a one-off event, but it was too early to determine anything definitive.

On Saturday, October 26th, we planned a family day out. After arriving at the location and getting ready to enjoy the day, Ellie had another seizure. This was devastating, as it marked the beginning of more frequent episodes.

In the following week, Ellie had three more seizures. The third one was particularly severe, as she was struggling with a cold and had difficulty breathing during the episode. Once again, we called 999, and Ellie was taken to the hospital for further tests. This time, she was admitted for monitoring.

On her first night in the hospital, we were fortunate to have a wonderful pediatric doctor who specialized in pediatric epilepsy. He immediately started her on medication, which reduced the frequency of her seizures to once a week or once every two weeks.

Currently, Ellie is under the care of a pediatric neurodisability consultant and epilepsy nurses who are working tirelessly to achieve better seizure control. While progress has been made, she still hasn’t achieved seizure freedom.

Ellie’s condition has impacted her independence, as she now requires constant supervision. She also experiences daily absence seizures, which make it difficult for her to keep up with conversations and lessons at school. This has added to her challenges in learning and socializing.

Epilepsy has touched our family in other ways too. My absolute bestest friend was diagnosed in her early 20s, and her seizures led to a loss of independence when she couldn’t drive for two years. Watching this happen to her was heartbreaking but equally I was in ore of her bravery and resilience while she navigated this period of her life.

Our beautiful niece also has epilepsy, which developed after major surgery. After a long and hard-fought battle led by my sister in law, she was able to receieve the treatment she needed and has now been seizure-free for 18 months.

Ellie’s journey, along with other members of my family highlights the profound challenges epilepsy brings not only to them but there families too. Most importantly, it also bought them the strength and determination required to navigate them.

Epilepsy is apart of them, it doesn't define them.