List date(s) this work was published or aired.
Nov. 23-24, 2011
Provide a brief synopsis of the story or stories, including any significant findings.
This two-part narrative describes a family’s confusing, frustrating months after they first noticed their infant was having nearly constant seizures. Doctors diagnosed rare infantile spasms, a form of epilepsy. Treatment after treatment failed, leaving the parents with what they believed was the only humane option, frightful as it sounded: allow a surgeon to remove half their son’s brain.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
No
Explain types of human sources used.
The story was constructed after numerous interviews with family members, physicians and therapists, including in the child’s hometown and during the boy’s exam one year after surgery at UCLA.
Results:
A powerful tale for readers, who responded with such comments as: “Thank you Katy for bringing epilepsy to the awareness of your readers .¤.¤ The helpless feeling of watching your child have seizures is heart wrenching. The impact on the individual, the parents, and the rest of the family is immense. Our family will pray for Evan and the rest of his family. We look forward to hearing more in your coming articles.” That sentiment fed our subject’s parents with hope as they work to raise awareness of the rare condition, the radical surgery and the years of hard work ahead for their son and others like him.
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
no
Advice to other journalists planning a similar story or project.
Look for the emotional component of any story and embrace narrative nonfiction techniques.