Sam's Story

Sam
Age 15
Hereditary Dystonia

Cook Children’s Medical Center

“Something is telling my brain that when my foot is normal, it’s causing me pain. The dystonia takes my foot and contorts it. All it really does is cause me more pain, but the brain doesn’t register it.” Those are the words of Sam, 15, intelligently describing hereditary dystonia. Sam’s simple explanation is about a very complex problem that has made the last few years of his life anything but simple.

In March 2007, Sam started having trouble walking. His condition worsened but no one could provide an accurate diagnoses of the problem. Finally Sam was accurately diagnosed with hereditary dystonia. Suggested treatments just led to more excruciating pain. Eventually, Sam’s family found the key to unlocking his pain: the medical team at Cook Children’s Medical Center. It was there that they were introduced to pediatric deep brain stimulation. This procedure uses electrical signals to change the messages from the brain and Cook Children’s was leading the way in this cutting-edge treatment.

Sam was fully conscious during a six-hour brain surgery that finally gave him his life back. The surgery proved overwhelming successful and Sam returned to all the things he loves: reading, scouts and sailing.