Life Improves for 14-Year-Old With Dystonia

When you think of 14-year-old boys, what do you think of? Rough-housing, raging hormones, an abundance of energy, maybe a little teenage rebellion?

Rowdy teens in a pick-up truck
Is this what comes to mind when you think of teenagers?

Often that’s the case, but Cooper Wilson, a 14-year-old with dystonia, had more critical things to focus on.

Wilson was born with the neurological disorder that causes the body to painfully twist and contort, so it’s all he’s ever known. However, that doesn’t make it any easier. He struggled with very simple tasks, such as buttoning his shirt or writing his name.

After several attempts to relieve his symptoms with medication and physical therapy, Wilson and his family decided to try a more drastic measure—a rare brain surgery called deep brain stimulation.

Dr. Tim Feyma took the lead on the surgery. Because the surgery is complicated, it requires 15 people who are completely locked in and focused on the task at hand. During the procedure, doctors implant a device with “wire-like electrodes.” The electrodes run up to Wilson’s brain, using a battery pack that’s surgically inserted under the collarbone. Doctors hope that by inserting these devices, they can counteract the shaking and twisting that Wilson experiences.

xray of head with deep brain stimulation wires
In deep brain stimulation for dystonia, constant signals are sent to the brain, helping to control symptoms. Source:

Since 2012, 18 surgeries of this kind have been performed on dystonia patients.

Though it was a frightening and risky decision for Wilson to make, the surgery paid off for him; he has much more control over his symptoms. Wilson and his doctors have a remote control device that can adjust his settings with a push of a button.

Nowadays, Wilson is able to be a 14-year-old and experience the things most 14-year-old boys do.

Happy baby elephant
We’re so happy for Cooper and how well things are now going for him! Source:

Resources to learn more about dystonia, or to find support:

Winnie Nash

Winnie Nash

Winnie Nash, born and bred in Charleston, South Carolina, likes to think she’s sweet as tea. Passionate for people, stories, and a little bit of glitter, she has an especially soft spot for patients and their journeys. A writer with true disdain for clichés, Winnie catches every detail of a story—intently listening—craving the next word. Some may call it nosiness, but to her, it’s just wholesome curiosity.

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