By Mike Celizic
For three years, little Cameron Mott’s life was a nightmarish succession of violent seizures that consumed her days and threatened her life. Finally, doctors told her parents there was a way to stop them: All they had to do was remove half of Cameron’s brain.
It was not a diagnosis a parent wants to hear. And going through with the operation was not an easy decision. But the alternative was a steady deterioration of the right half of Cameron’s brain — and her whole life.
“It was very scary, because you just can’t imagine what your child will be like after such a dramatic brain surgery,” Shelly Mott told TODAY’s Ann Curry Thursday in New York. “It just doesn’t seem like they can be the same child.”
Shelly could smile as she said it, because next to her on the couch was Cameron, all curly hair and smiles and bouncy energy.
They got their daughter back
Her father, Casey Mott, called Cameron “bubbly,” and the adjective fit perfectly. She was bubbly as a baby, and now, after the radical surgery, she’s bubbly again.
“We more or less lost our daughter and got her back,” Casey told Curry.
Cameron’s story really began six years ago, when she was 3. She suddenly started having seizures. A video supplied by the Motts shows the girl playing happily, then suddenly going completely rigid and collapsing headfirst onto the floor.
For the next three years, the Motts took Cameron to dozens of doctors who conducted hundreds of examinations in an effort to discover what was causing 10 or more such seizures a day. All the while, Cameron’s cognitive functions were deteriorating and she was losing the ability to speak.
Finally, doctors put a name on the condition: Rasmussen’s syndrome, a condition that causes the destruction of one side of the brain. The solution was radical. It’s called a hemispherectomy, which means the removal of half of the brain.
The Motts live in North Carolina, and they agreed to travel to Johns Hopkins University Medical Center in Baltimore, where neurosurgeon Dr. George Jallo led the team that carefully removed the right side of Cameron’s brain. The surgery took more than seven hours.
That was in 2007, when Cameron was 6. An image of her brain shows an empty space on the right side and a normal brain on the left.
Since the left side of the body is controlled by the right side of the brain, doctors knew that Cameron would be paralyzed on her left side when she awoke. But they also knew that the brains of children have amazing abilities to rewire themselves.
“We like to do children because of their ability or their plasticity — that’s the ability of the other side of the brain that we haven't removed to take over and control the function of the diseased half we’re removing,” Jallo told NBC News.
Cameron was immobilized for the first two days after the surgery to allow her brain to stabilize. Then she went into an intensive physical therapy program. Four weeks after the surgery, she walked out of
The agonizing decision the Motts had had to make turned out to be right.
“It was absolutely the right choice,” Shelly said. “And, really, for us, when we knew what she had, and we knew that this was our only option to help her, the risk was something that we were willing to deal with because her quality of life was so poor.”
Cameron was able to return to school, where she is now in the second grade and a good student. Her physical therapy sessions have just recently ended, and she can run and play, although she has a slight limp and still wears a brace on her left leg. She also has lost some peripheral vision.
When Curry asked Cameron if she had any lingering effects from the surgery, she said, “No. None at all.”
“We were just asking for some sort of normalcy,” Casey told NBC News. “We didn’t know that we were going to get the full deal. I tell Cameron’s story as a miracle. I truly believe that miracles happen and my daughter Cameron is a walking example of that.”
NBC’s chief medical editor, Dr. Nancy Snyderman, showed on a medical model how half of Cameron’s brain had been removed.
“Because the pediatric brain is so elastic, the left side of her brain took over for the right side, and look at her now. It’s extraordinary,” Snyderman said, looking at a girl who looked like any other 9-year-old.
Although shy on camera, Cameron did share with Curry her goal in life.
“I want to be a ballerina when I grow up,” Cameron said.
Three years ago, that was an impossible dream. Today, it’s one that may yet come true.