Indiana boy donates brain to science — while he’s still aliveJanuary 8, 2016
PORTAGE — On a recent day, Johnny Allbritton sat on the couch, watching TV, talking baseball, teasing his sister. Things a normal teen does.
This was despite the fact he donated his brain to science two years earlier.
Not all of his brain — evidenced by the fact he was, well, alive — but enough to make him a rock star at his family's house in Portage.
"I thought it was cool," Johnny's 12-year-old sister, Sueellen, said of his giving part of his brain to science.
When Johnny was 15 months old, he had his first seizure, the outcome of spinal meningitis. At that time, though, the attacks weren't frequent or severe.
By the time he was approaching adolescence, however, the seizures were happening a few times a day, often leaving him unconscious.
So his doctors recommended brain surgery. He was scared; his family was too, but Johnny's epilepsy was getting out of control.
They traveled to Riley Hospital for Children at Indiana University Health in Indianapolis for surgery in February 2014. On the day of procedure, Dr. Jodi Smith, the pediatric neurosurgeon, asked Johnny if she could use his removed right temporal lobe for research. He said sure.
During the course of the 13-hour procedure, the surgical team took out the piece of Johnny's brain that had been causing the seizures, put it in a Petri dish and brought it to the IU Health neuroscience lab. There, with Johnny's brain neurons still firing, researchers from IU and drug-maker Eli Lilly tested an experimental epilepsy medication on the tissue, monitoring it for seizure activity.
The study is still ongoing and the drug remains in the development phase, but Smith and her team hope to be published in a major scientific journal soon.
The research could hold great advances for epilepsy treatment. Smith noted that most epileptic children aren't candidates for surgery, so they must rely on medication. So the more effective the drug, and the fewer side effects, the better.
"We'd like to understand how memory works and how neurons talk to each other to accomplish the things they do, which is so amazing," Smith said. "These studies will help us to understand how seizures occur and how we can block them with medications and hopefully come up with new medications."
As for Johnny, now 14, he had a couple of seizures after surgery, an effect of weaning off his medications too quickly. He was then seizure-free for a year-and-a-half before having another attack a few weeks back. But the procedure brought about great changes in the teen's life.
"In the two years since surgery, we're learning about him for the first time," said his mother, Katie, 31, noting he rarely spoke before then.
They've discovered his love of baseball (he's a Cubs fan), how he doesn't have a filter ("What he has on his mind is what comes out," said his grandmother, Sue Burton) and his propensity for pranks (like the shaving cream that ended up in his sleeping aunt's hair).
Johnny, a seventh-grader at Willowcreek Middle School in Portage, has neurological damage from all the seizures he suffered, though he's undergoing speech therapy to try to boost his communicative abilities. Intellectually, he's at about the level of an 8-year-old, so he's receiving special-education services.
His family's proud of all he's been able to accomplish, both for himself and other people with epilepsy he may be helping with his tissue donation.
"Johnny's our hero," his grandmother said. "For all that kid has gone through all his life, he's still Johnny."