Lusi Serrato’s daughter Cristian had just turned 8 years old when her health began to deteriorate rapidly. She had loved learning to swim and dive, her mom says, but she stopped wanting to go in the pool. Her appetite decreased dramatically, and along with it, her energy. She began to walk more slowly and started talking less and less. “Slowly, everything became so much harder for her to do,” Serrato says.
Eventually, Cristian could no longer walk or talk. Her cognitive abilities were normal, but even sign language, which she learned in order to communicate with those around her, became impossible, as her hands began to curl tightly into fists that she couldn’t unclench. Her head began to bow, and her body’s muscles tightened into twisted postures. Soon she could no longer sit up. “It was to the point where it looked like she was reaching for her toes, and that’s how she was all the time,” Serrato says.
Serrato quit her full-time job to take care of Cristian, taking her to doctor after doctor, getting more and more frustrated as tests proved inconclusive. “Nobody could tell me what was wrong with her,” she says. “The doctors would tell us, ‘The tests came back normal, so that’s good.’ I’d say, ‘No, that’s not good, because she’s still in pain.’”
Finally, after exhaustive genetic tests, Cristian was diagnosed with dystonia parkinsonism, the result of a chromosomal abnormality. She was put on a series of medications, most of which didn’t work. Then, a neurologist suggested the Texas Comprehensive Spasticity Center at Memorial Hermann Hospital, where a team of neurosurgeons had had success treating adult patients with Parkinson’s disease by implanting a deep-brain-stimulation device inside patients’ brains. “They said, “It’s never really been tried on little kids, mostly used on adults,’” Serrato says. “And you know what? It’s my kid, and when someone says they’re going to open up your kid’s head, and it might help, it might not ... My husband and I were afraid it wasn’t going to work.”
After two more years trying various medications, with Cristian’s health continuing to deteriorate, the Serratos decided the procedure might be the only option. The family met with a team of neurologists and neurosurgeons, led by Dr. Manish Shah, director of pediatric spasticity and movement disorder surgery at Children’s Memorial Hermann Hospital. “She couldn’t move, and nothing else was helping her,” Shah says. “It’s very difficult to see a child go through this.”
Shah and his team, including Dr. Albert Fenoy, an expert in deep brain stimulation at Memorial Hermann’s Mischer Neuroscience Institute, thought that Cristian might be helped by the procedure. The idea is to implant a pacemaker-like device underneath the skin, with electrode wires placed on the areas of the brain responsible for movement, which send out pulsing frequencies that may rewire faulty firings. The stimulator stays implanted for life, and the patient visits a neurologist monthly to fine-tune its frequencies.
Cristian underwent surgery in October. And although the positive effects typically manifest over time, she started feeling better almost immediately. “She was very responsive much sooner than anticipated,” Fenoy says, pulling up a photo of Cristian standing, beaming from ear to ear. Today the girl can relax her own arms, open her hands, and sit in her father’s lap for the first time in years. And although she’s not speaking yet, she’s back in school and using her iPad to communicate with friends. “Every day she gets stronger,” Serrato says, “and she continues to inspire me and everyone around her.”