Meet Evie

Evie was born full-term on August 10, 2021 — a perfect, beautiful baby girl weighing 8 pounds 4.6 ounces and measuring 21 inches long. She grew and developed right on track, filling every day with smiles, curiosity, and love. But in April 2022, Evie’s world — and her family’s — changed when she had her first seizure. She was diagnosed at Nationwide Children’s Hospital with complex febrile seizures. A month later, she experienced a more serious focal seizure that required medication to stop and led doctors to rule out a possible stroke. After more testing and a week-long hospital stay, Evie was diagnosed with complex febrile seizures and mesial temporal sclerosis.

When Evie met her neurologist, Dr. Christopher Beatty, he immediately wanted to search for answers and ordered an epilepsy genetic panel. Even though the results came back without clear answers, Evie continued to face her seizures bravely. Over the next several months, she endured status epilepticus episodes and countless challenges — but her spirit never wavered. By the end of 2022, Dr. Beatty and the neurosurgery team began discussing the possibility of epilepsy surgery to help Evie’s hard-to-control seizures.

In May 2023, Evie underwent a week-long epilepsy surgery evaluation, bravely coming off her medication to allow her doctors to study her seizures. True to her strong and determined nature, she fought them off until the very end of the week — showing everyone just how resilient she truly was. In June 2023, Evie was approved as a surgical candidate, and in July she met Dr. Pindrik, her neurosurgeon. He carefully explained everything about the surgery and the possibilities ahead.

In August 2023, Evie underwent a right temporal lobectomy and right hippocampectomy. She amazed everyone with her recovery — expected to stay in the hospital all week, she was ready to go home just four days after surgery. Her biopsy revealed focal cortical dysplasia type IIIa, finally giving her doctors some long-sought answers.

Then, in January 2024, Evie surprised her medical team again when she experienced a new and more severe seizure type. This time, genetics became involved once more. Based on her developmental history, eczema, and other features, the genetics team suspected a rare condition — and they were right. Evie’s rapid genome sequencing confirmed a mutation in the SMARCA2 gene, giving her the diagnosis of Nicolaides-Baraitser Syndrome (NCBRS) — an ultra-rare genetic condition with fewer than 300 known cases worldwide. Even more remarkable, Evie’s specific gene variation had never been seen before in medical literature.

Today, in October 2025, Evie is thriving. She has been seizure-free for a long time, attends preschool, and continues to amaze everyone who knows her. She’s only mildly delayed in her fine motor skills, but she shines in her gross motor and problem-solving abilities. She’s finding her voice again and beginning to talk more and more each day.

Evie’s journey is one of strength, courage, and hope — proof that even in the face of rare challenges, a determined little girl with a brave heart can light up the world. Her story continues to inspire, showing that miracles aren’t just things we dream about — sometimes, they’re named Evie. 💜