ATLANTA -- "Big day, yeah. It's here," Rich Enners says sitting inside Children's Healthcare of Atlanta with his 18-year-old son Kevin next to him and his wife Claudette across the hall, talking to the nurses.
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This morning has been coming for a long time now.
The decision to be here could change everything.
While life-changing decisions that pose risk are never easy to make, when those decisions involve your child, they're agonizing.
"We've made this choice because we think it's going to be hugely beneficial for his future," Rich says.
Kevin Enners, a terribly bright 18 year old, college bound this month, has been debilitated since birth by a side effect of having cerebral palsy. That side effect is called dystonia. Basically it means Kevin's muscles not only don't work with him, they work mightily against him, especially when he tries to speak.
He is the first patient at Children's Healthcare of Atlanta to ever undergo deep brain stimulation surgery. The procedure has been used to successfully control tremors in Parkinson's patients.
"We're going to put both of the wires into your brain, extension wires going down," Dr. Robert Gross explains.
Dr. Robert Gross will lead a team from Children's Healthcare of Atlanta and Emory that will implant electrodes in an area of Kevin's brain called the Globus Pallidus.
"This area of the brain is like power steering," Gross says. "It allows everything to move in a more graded and controlled and easier fashion. That is the area that is ostensibly abnormal in Kevin."
Wires will be run over Kevin's head and behind his ears, to a pacemaker implanted on each side of his collarbones.
"He'll have a completely implanted system that is a generator with a battery that generates electrical impulses that will travel up those wires into the brain and nullify the abnormal activity in his globus pallidus, and will hopefully lead to improved control of his movements," Gross says.
Dr. Gross explained the risk to Kevin and his parents. "Chance of bleeding in the brain, 1 percent. Chance of infection, 5 percent."
Kevin is ready. His constantly moving body has tried, but not succeeded in hiding the gifts this young man possesses. He writes novels, using his eyes to type a single letter at a time. He competes with his father in races, his hands and feet strapped to his bike -- their goal, the Boston Marathon next spring. Moments before surgery, Kevin tells us what he's thinking
"I'm visualizing," he says, his language stilted and difficult to understand.
Claudette and Rich help him translate. "There's a trail up around the lake called Iron Hill, and it's our favorite place to run. So he's visually being there right now right, Kev?"
Rich begins to cry, moved by Kevin's last thoughts before he goes into surgery. Kevin cries with him.
The Enners say goodbye, and Kevin goes into surgery.
The surgery, expected to take eight hours, lasts close to 13 hours.
Six weeks after the surgery, Kevin is still healing, still smiling.
The scars are obvious.
Rich traces his finger over his son's head, following the wires. "The electrodes come in this area here. And they travel into this spot here and around the ears and down the neck to this spot here."
The pacemakers are clearly visible on his thin frame. Just a few days ago, doctors turned on the system.
Kevin says he felt the electrical current, only initially. Doctors will keep adjusting the system for up to a year. How much improvement Kevin gets won't be known for several more months. But already, Kevin and his family sense a difference. They say Kevin seems more relaxed.
Of his new nickname 'Sparky,' Kevin says, "It fits..it fits." He laughs.
It was a choice not without risk, but for a determined young man bent on independence, it may be the thing that sets him free.
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