Patient stories

Stroke and seizures: Kade’s story

After suffering an inexplicable stroke as an infant, 9-year-old Kade had experienced debilitating seizures throughout his life. When medication stopped controlling his seizures, Kade’s parents made what many would consider a bold decision – to have the left part of Kade’s brain disconnected through a rare and complex surgery called functional hemispherectomy.

Read the full story of Kade’s journey and his surgery performed by Sean Lew, MD.

Craniosynostosis: Cendreanna's story

Barb Gellin could tell something was off with her daughter Cendreanna not long after she was born. It was hard to articulate, but the shape of her head didn't seem quite right. She would later learn that Cendreanna had craniosynostosis, a condition that affects about 1 in every 2,500 live births where seams between the bones of the skull are prematurely fused. Read Cendreanna's story.

Neurofibromatosis: Emily's story

What started with a bad headache turned into an odyssey of 12 surgeries over the next two and a half years for Emily. Read Emily's story.

Epilepsy: Adam's story

For several years, Patty and Alan Kettelhut of Nebraska say they lost their son Adam. It turned out that they would have to go all the way to Wisconsin to find him again. Read Adam's story.

Epilepsy: Lilly's story

A mom shares her daughter’s experience with epilepsy. Read Lilly's story. 

Tourette syndrome: Emily's story

A couple years ago, Emily Shelby had a horrible Valentine's Day. She was hospitalized for a week, in the clutches of a dystonic tic that wouldn't let go, keeping her bent over in half with her knuckles dragging on the ground. Read Emily S's story.