Patient stories

Ketogenic diet: Maggie's story

Maggie’s story began when she was about 4 months old. Her mom Jamie noticed that Maggie’s head would drop periodically, and only for a few moments, and then she would resume her normal activity. Read Maggie's story.


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.

Lilly in the Smokey Mountain

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 story.
Emily and Senator Tammy Baldwin