By: Courtney Harrington
All any parent could ask for is a normal life for his/her child; that was not the case for theSmithtown, N.Y. couple Jay and Debbie Lettieri. When their son was around the age of nine, he began moving his fingers uncontrollably and opening and closing his mouth without actually talking. Eventually, the couple’s son Robbie would randomly lash out. Such strange behaviors led to a trip to the doctor’s office. Soon after their visit, Robbie was diagnosed with Tourette’s syndrome, which is a “neurological condition that causes involuntary movements and repetitive vocalizations.”
As Robbie got older, his condition continued to grow worse. His “tics” were so traumatic and violent that the young boy was at risk of severely hurting himself. Throughout the years, Robbie broke many of his bones, punched himself numerous times and contorted his body into positions that should not be humanly possible, all as a result of his Tourette’s. His episodes would last for as long as two to three hours at a time. Robbie had no control over his body after the tics began. They became so bad that the child was pulled out of public school and put into homeschooling due to distracting other children with his episodes. “When we go to the movies, I have to stand up and let everybody know Robbie has Tourette’s and he will be making some noises,” Debbie Lettieri explained.
Over the period of six years, Robbie was put on 42 different kinds of medication such as anti-depressants and anti-hyperactive drugs in hopes that one would help with his condition. Instead, the boy’s symptoms continued to worsen. Some of the side effects of the drugs took a toll on Robbie. Some side effects of the medications were so extreme that he attempted suicide three times. It eventually came to a time when his parents did not know what else to do to help Robbie. The family searched all over the country for a doctor that could help their son, until they came across the Movement Disorders Center at North Shore University Hospital. Finally, Robbie was taken to a neurologist. Two doctors at the hospital suggested that Robbie take part in a procedure known as deep brain stimulation, an experimental surgery that would include surgically implanting a device known as electrodes deep into Robbie’s brain. Typically, the surgery was performed on patients with epilepsy and Parkinson’s disease. Due to the fact that the FDA would not approve the surgery for a patient with Tourette’s, the Lettieri family would have to find a way to pay for the surgery on their own. The young boy was aware of the risks involved with going through with such a surgery, but he decided that something had to be done.
Doctor’s spent six months trying to convince the hospital to let them perform an experimental brain surgery on a patient that was a minor. Word got around about Robbie’s surgery, and random couples appeared on the Lettieri’s doorstep with donations to help pay for his surgery. Debbi Lettieri claimed they were people she had never met and could only hug them in tears to show her deep appreciation. Robbie’s surgery lasted 12 1/2 hours. Doctor’s felt confident that the procedure would pay off, but could not be sure just yet. When Robbie woke up, he immediately felt a difference. “It was just mind-boggling,” he said.
All thanks to Robbie’s surgery, he is finally able to live the life of a normal, everyday teenager. He is now able to drive and go out with friends. He even has a curfew for the first time. After years of violent tics and torture, Robbie will be able to attend public school for his senior year of high school. For the first time in a long time, the Lettieri’s have music playing around the house and laughter in every room. The deep brain stimulation not only forever changed Robbie’s life, but changed his family’s as well.