The Day an Insurance Company Finally Listened: When the News Became the Last Hope

Brandi Sharp has a routine. Most nights, she is up, checking. Making sure her daughter is breathing. She is a school nurse in rural Hazel Dell, Illinois. She is a mother of three. And for the past eight years, she has spent virtually every waking hour — and most of the sleepless ones — trying to find something, anything, that will stop the seizures that have consumed her daughter's life. Cambrie is 13. She was born a micro-preemie at 27 weeks. She was healthy until she was 4 years old. Then came the first seizure. Three weeks later, another. Then weekly. By 6, several major seizures a day. For more than a year she lost the ability to speak. She was incontinent. When she was 7, after three consecutive weeks of nonstop seizures, doctors put her into a medically induced coma. That year, she had brain surgery — a corpus callostomy, where doctors partially cut the band of nerves connecting the two halves of her brain. They also implanted a device in her chest that sends electrical pulses through the vagus nerve in her neck. For a while, it worked. Six years later, she is back to multiple seizures a day. "She'll have a seizure and she'll say, 'I wish they would find a way to fix this,'" Brandi said. Her doctors at WashU Medicine in St. Louis thought they had found one. It is called deep brain stimulation — DBS. Like the vagus nerve implant, it involves a chest device sending electrical signals to the brain. But DBS connects directly to electrodes surgically placed inside the brain, in the specific zones causing the seizures. It is more targeted. More powerful. And for treatment-resistant epilepsy in children like Cambrie, it can be transformative.