Patient stories

Organ donor: Laura's story

“Will you consider donating Laura’s organs?”

The words hung in the air, incomprehensible to Susan and Ron Miller. Just four days earlier, their 14-year-old daughter, Laura, had been healthy and full of life. But she became really sick, really fast. With that question, reality began to sink in. Laura would not be coming home. And now, they were faced with a decision that no family ever thinks they’ll have to make.

Read more about Laura's story and how donating organs can save lives.

Brain tumors: Blake's story

Just more than a year ago, Megan noticed her son, Blake, developed a head tilt out of nowhere. Megan, an occupational therapist with Children’s Wisconsin, couldn’t get rid of the feeling in her gut that something was wrong even though Blake was an otherwise happy and healthy 1-year-old, meeting all of his developmental milestones.

Read more about Blake's story and the surgery that was performed by Andrew Foy, MD.

Seizures: Mikayla's story

My family has been connected to Children’s Wisconsin for the past 13 years. When my first-born daughter, Mikayla, was 11 months old, we noticed that she was not meeting developmental milestones. She was diagnosed with lissencephaly, a genetic brain malformation. Seizures go hand-in-hand with this disorder, and by the time Mikayla was 3 years old, she had her first seizure and ambulance ride to Children’s Wisconsin. That began our journey to becoming a Children’s Wisconsin family. The seizures got exponentially worse, and by the time Mikayla was 5, she was also diagnosed with a severe form of epilepsy. We had just had our second child — a baby girl named Avry — so we were juggling a lot as young family. 

Read more about Mikayla's story and the Miracle Marathon fundraiser that occurs every year.

Raynah's story

After a few weeks battling what was thought to be a mild illness, 11-year-old Raynah suddenly lost the ability to move or talk. Once she was rushed to the emergency room, neuroscience specialists at Children’s Wisconsin discovered a large collection of infected fluid on her brain. Less than two hours after arriving at Children’s Wisconsin, Raynah was headed to the operating room for emergency brain surgery.

Read more about Raynah's initial encounter with the Neuro team, how she is doing now, and more about her surgery performed by Irene Kim, MD.

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.