Left strong: Catching up with Candon

By Erika Mahoney

January 25, 2014 Updated Jan 25, 2014 at 12:07 AM EST

Lockwood, NY (WBNG Binghamton) Candon Westervelt seems like an ordinary fifth-grader, goofy, active -- and sometimes a pain to his older sister.

"Nope, you would never know," said Candon's mom, Colby Westervelt.

But he is extraordinary. Candon only has half his brain, the result of a rare surgery last year.

"Candon's strength, his positivity and trust that he had in his doctors and in us, was tremendous, and that really helped to carry us through," Westervelt said.

Nearly 40 weeks ago, Candon underwent a hemispherectomy. The surgery is the only hope to cure Rasmussen's Encephalitis, with which he was diagnosed nearly two years ago.

RE is a rare brain disease diagnosed in one in one million people. It caused Candon's brain to seize nearly 200 times a day, with up to 50 full body seizures every month.

Candon's story surfaced last year, just weeks before the surgery.

The "unknowns" and "what ifs" weighed heavily on his mom's shoulders.

"There's not a day that passes that we don't cry," she said in March 2013. "But we are looking forward to the future, and what it holds for Candon."

Looking back, that first interview and the surgery seem like yesterday for Colby, but a lifetime for Candon.

"He was OK until he had to crawl over onto the other table," Westervelt remembered. " He looked over at me and said he was going to cry, and said that he was scared.

"And that was hard, that was very hard," she added. "That was actually the first time he was actually nervous through this. Not knowing, well knowing that you are going to come out of surgery paralyzed in half your body."

Candon knew exactly what was happening. His parents filled him in on everything.

"Making the decision to go forward with surgery, that was partly his decision. And a lot of people may say, well that's crazy... he was 9. No, he understood. Kids are more capable and understanding than a lot of people realize."

Removing half of the Candon's brain left half his body paralyzed.

But still, he was undeterred.

"His doctor, his neurologist, said that the soonest any of his patients with this disease and with this surgery have gone home is six weeks. And Candon left in three."

Candon came home in May to a community full of love and support.

"Everybody cares about me and I'm cured" Candon said.

Although Candon will never return to 100 percent on his left side, through hard work and therapy, he'll be close. The remaining half of his brain will continue to relearn for what was removed.

In the void created by doctors was saline, which Candon's body will eventually turn into something more solid.

And while his seizures haven't returned -- going on nine months -- his 10-year-old personality sure has.

Candon said he feels "no different" in his head, only better.

There is no known cause for Rasmussen's Encephalitis.

Candon's parents donated his brain to research in hopes of one day finding the cause, and a cure, for the rare disease.