Katie Verdecchia was born healthy -- a beautiful baby girl.
But when she was just a month old, she started having seizures. Soon the Vancouver, Wash., girl was seizing every day, up to 50 times a day. The diagnosis: Aicardi Syndrome, a rare disorder in which the right and left sides of the brain don't connect. Doctors told her parents, Maryalicia and Brian Verdecchia, that their daughter might live to be 8.
As Katie's seizures worsened, and various medications failed to help, Katie's doctors said there might be a solution, but it was a drastic one: Hemispherectomy, the removal of half the brain. It's a rare surgery performed fewer than 200 times a year worldwide. Usually, kids with Aicardi Syndrome have damage on both sides of their brains, but Katie's left brain seemed healthy -- making her a candidate for the risky operation.
"You do what you have to do for your child -- it's hard making that decision to have surgery. But for us, there really wasn't any choice," Maryalicia Verdecchia told TODAY's Ann Curry.
In eight hours of surgery last November at Mattel Children's Hospital in Los Angeles, surgeons removed the right half of 2-year-old Katie's brain. The hemispherectomy was declared a success: No more seizures. But Katie's family still had to wait to see how she would recover -- and how much function she would have with only half a brain.
Hours after surgery, Katie woke up and almost immediately moved her left arm, her parents told TODAY earlier. Because the right brain usually controls the left side of the body, and vice versa, this was an important sign that Katie's left brain had already taken over performing functions for the right brain.
Two months later, Katie is recovering well. She smiles, gives high-fives and kisses, rides her tricycle and is enraptured by her parents iPad — which, her mom reports, she can turn on, unlock and pick apps to play with. As her parents recounted their tale on TODAY, Katie sat on her father's lap and busily played with the iPad.
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"She's going to town here," Curry exclaimed.
Doctors don't know if Katie will be able to talk -- the left brain usually controls language function, and she still has her left brain, but children with Aicardi Syndrome often can't speak. They're tracking her progress closely. Meanwhile, her parents take joy in every little step forward for their now seizure-free child.
"We try not to put expectations on her," Maryalicia Verdecchia said. "We try to just enjoy."
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