C.J. Soeby

Age: 9
Grade: 3
Market: Avondale, Arizona

C.J. Soeby is a happy and normal kid who enjoys people, animals and talking. At 9, he’s already been on NBC Dateline, is a spokesperson for the Student’s Supporting Brain Tumor Research annual Walkathons, and is an outspoken advocate for the Epilepsy Foundation.

C.J. was born with a rare type of tumor in his brain, one that caused him to have hundreds of seizures per days. Doctors told the family that the tumor was inoperable because it was located near critical structures of the brain, so C.J. tried dozens of different drugs, all to no avail, until the family heard about an Australian doctor who was successfully operating on just the sort of tumor C.J. had.

C.J.’s operation was so successful—removing almost the entire tumor without any of the dire consequences predicted by U.S. surgeons—the Soebys convinced neurosurgeons in the U.S. to bring over the Australian doctor to learn from him how to perform the surgery.

Their advocacy paid them back karmically: When C.J.’s seizures returned, U.S. surgeons were able to use a modified form of the Australian’s surgery to remove the rest of his tumor so he is again seizure free.

“Seizures look kind of scary,” C.J. said. “But they’re really not. When you see a seizure, you shouldn’t be scared. Gelastic seizures are like constant laughing.”