It took a remarkable operation to cure Roy Barake’s rare form of epilepsy, known as infantile spasms. A just four-months-old Roy started having seizures, and eventually he was plagued by up to 80 spasms a day.

“It’s rare, but it’s a devastating type of seizure disorder,” said Royal Children’s Hospital’s director of neurology, Assoc Prof Andrew Kornberg.

RCH director of neurosurgery Wirginia Maixner and children’s epilepsy program director Dr Simon Harvey performed the extraordinary operation, where a huge section of the four-year-old boy’s brain was removed.

His parents were told Roy could lose vital functions, but this was the best chance of a normal life.

Prof Kornberg described the outcome as exceptional. Tests revealed Roy’s brain functions have not been affected by the operation. He said he was so optimistic Roy had experienced his last seizure that he discharged him.

“We thought that our child might not even be able to say our name or sit up, we are really blessed to have this outcome,” Mrs Barake said.

Roy is just like any other boy his age, his parents say. “We are just thrilled. He’s also planning to start kindergarten next week.”

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