Caring for Candon

By Erika Mahoney

March 13, 2013 Updated Mar 13, 2013 at 9:55 AM EDT

Waverly, NY (WBNG Binghamton) A full-of-life fourth-grader shouldn't have to undergo four brain surgeries and another on the way. A family of such a young boy shouldn't have to spend this much time in a recovery room.

But it's the reality for Candon Westervelt, who -- because of a rare brain condition -- is as brave as his boyish hair is red.

The bright-eyed Candon lives life with a sparkle not unlike his pair of skull earrings.

He's all-boy, loving anything and everything with wheels -- and the occasional sibling rivalry.

"I like skateboarding, annoying my sister, playing with my dog, riding my bike..." Candon said.

But those simplest of activities for the Tioga County tot have grown more difficult.

"Two and a half years ago, we would have never known this was going to happen," said Candon's mother, Colby Westervelt.

On Oct. 15, 2010, Candon had his first of what are now nearly twice-daily seizures.

"He was a normal child, healthy, athletic, energetic, intelligent," Colby said, "And boom, he had his first seizure and they continued to progress."

His family took him from doctor to doctor across the country, trying to find a diagnosis.

Candon has nearly 50 seizures every month with little or no warning. Some of them last as long as 50 minutes.

Candon says it's scary.

"You can't see them, but I'm having them just in my head right now," he said. "I'm having them and you don't even know it."

Finally, in November 2012, he was diagnosed with Rasmussen's Encephalitis at the Mayo Clinic in Minnesota.

It's a disease so rare there is currently no known cause -- and only one almost unbelievable cure.

"The only cure unfortunately is a complete hemispherectomy," Colby said. "They remove the entire diseased side of the brain. If you don't remove the diseased side of the brain, the seizures continue to worsen and it causes hemiparesis, which is paralysis of the affected side of the body."

His surgery is scheduled for April 25 at Johns Hopkins in Baltimore.

"I'm going to be a little scared but happy because I'm going to have, hopefully, no more seizures," Candon said. "And I'm going to be scared because it's going to be scary getting half of my brain taken out."

Colby says making the decision to undergo the surgery was difficult. But it's the best possible outcome for her son.

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

With surgery just a little more than a month away, his entire school district is coming together to support him. They're selling T-shirts that everyone will wear on April 25.

Colby's mom says it's uplifting knowing that so many people will be thinking good thoughts about Candon while he's in surgery.

The money raised will go to the Children's House in Baltimore, the housing program where Candon and his family will stay post-surgery.

Some of his biggest support comes from his best friends.

"He's getting half his brain removed and he's still going to live, and it's just amazing," Nicolas Desisti said.

They share their friend's positive outlook.

"He's going to have surgery and then be all better," Ryan Bennett said.

After the surgery, Candon's left side will be paralyzed until his body is retrained. That is done through intensive in-patient rehab that could last between a few weeks and three months, and outpatient rehab that could last between one and two years.

"You can have a normal life after having half of your brain removed," Colby said. "You regain most of your physical motion. Candon will be able to walk, he will be able to run, he will be able to play sports. He'll remember everything. And you actually come out of surgery with the same I.Q. or better."

That's because getting rid of the seizures helps improve focus for children with the disease.

Candon says over the next month, he will be spending as much time as possible outside -- and finding the time to annoy his big sister.

When asked what he looks forward to after his surgery, he says "driving my four wheeler."

Candon's brain will be donated to scientific research in hopes it will help find other cures for Rasmussen's Encephalitis.