HUFFPOST VIDEO
02/15/2013 12:47 pm ET

Girl With A Rare Form Of Epilepsy Had Half Her Brain Removed (VIDEO)

Imagine having a child with a rare neurological disease -- and then being told that removing half the brain is the only treatment. This was the case for Seth Wohlberg, father of ten-year-old Grace, who learned his daughter had Rasmussen's Encephalitis, a rare form of epilepsy where extreme seizures require removal of one hemisphere of the brain.

Wohlberg joined Huffpost Live's Nancy Redd to discuss his daughter's journey and the effects of this surgery.

"You slowly learn through whispers that the only thing they really can do for this is this awful, radical surgery. Which you're really trading, in a sense, an awful nightmare for just a bad dream," Wohlberg said. "This disease unfolds in a very malicious fashion in that there's no blood test, there's no single MRI scan, there's no CAT scan. It's a diagnosis of exclusion that's pieced together typically over several months."

After doing more research, Wohlberg decided Dr. Gary Mathern, UCLA Professor of Pediatric Neurosurgery, "was exactly right" for his family.

"Grace has done remarkably well," Dr. Mathern reported. "Every time I get a chance to see her, she's walking stronger, she's more engaged. And so she's done quite well from a post-take-out-half-your-brain kind of scenario. You'd be surprised what people can do with half a brain."

In 2010, Wohlberg started RE Children's Project to provide other families with information and support on dealing with Rasmussen's.

"These children have to relearn how to walk and relearn how to use the arm on the affected side," Wohlberg said. "Their ability to rewire is very large, but it takes several years of physical therapy to have a somewhat normal life."

Watch the entire segment on Huffpost Live.

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