Meet Kirk: A Nemours Children’s Hospital Champion

Meet Kirk: A Nemours Children’s Hospital Champion

During Family Advocacy Day, Kirk and his family will discuss his health journey, Nemours Children’s Hospital Delaware’s role in providing him with necessary care, and why we must invest in the future of patients like Kirk.

When Kirk was 15 months old with a fever, he had his first tonic-clonic seizure. His parents took him to the emergency department (ED) at Nemours Children’s Hospital in Delaware. After leaving the ED, Kirk had falling spells for the next two days where he would fall backwards. After the fifth time, they went back to Nemours and he was admitted for monitoring and an overnight EEG.

Kirk, a Nemours Children's Hospital champion,
is participating in Family Advocacy Day 2023.

Around midnight that same night, Kirk had another seizure. He had six more seizures over the next 12 hours. He was diagnosed with epilepsy and started medication immediately.

“A diagnosis like epilepsy is terrifying,” says Sarah, Kirk’s mother. “We didn’t know when a seizure would happen again. We didn’t know if Kirk was safe to leave with caregivers. We had a lot of questions and fear.”

From the time of his diagnosis until he was 3 years old, he received regular follow up care with the neurology team and did not have another seizure. After consulting with his neurologist, his parents and providers decided to wean him off of his medication because kids often outgrow epilepsy. However, at age four, he had a high fever which ended in another seizure. He started taking medication again and has continued to follow up with his neurologist since then. He continues to get routine blood work and EEGs.

“At first, we struggled with getting his medication dose effective enough,” says Sarah. “This was likely the result of his celiac disease and inability to absorb his food or medicine effectively.” As a result, Kirk was switched to an extended-release medication that was more effective.

To date, Kirk has not had a seizure since 2020 and his parents and providers are considering weaning him off his medication again this summer.

He is thriving and enjoys being a 7-year-old. He loves playing video games.

Family Advocacy Day

Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.