Florida boy thrives after groundbreaking brain procedure at Nicklaus Children's Hospital
A young Florida boy who once struggled to move or even hug his mother due to a debilitating neurological disorder is now swimming, biking, and running, thanks to a treatment offered at one of the few pediatric hospitals in the nation providing the procedure.
Nicklaus Children's Hospital in Miami is among the only pediatric facilities in the country performing deep brain stimulation (DBS) for children.
The treatment has dramatically improved the life of 10-year-old Tamryn Hendon, whose family travels nearly 500 miles from Tallahassee to receive care.
A dramatic turnaround
"It was miraculous," said Tamryn's mother, Tamara Hendon. "Now he swims, he rides his bike, he runs. He could do whatever he did before the onset."
Just over a year ago, Tamryn's life looked very different. He suffered from dystonia, a movement disorder that caused painful, involuntary muscle contractions. Tamryn said he could barely move and was unable to hug his mom.
"He started falling backwards. He couldn't hold himself upright and he would just, his back would bend and he would fall over and it would be worse later in the day," Tamara recalled. "It was extremely scary because we didn't know, is this a life-threatening condition? Is it life-limiting?"
From bedridden to biking
"He quit laughing, he quit smiling and he talked about death," she continued. "He was just in a really dark place for a 10-year-old boy."
After consulting doctors across the state, the Hendons met Dr. Migvis Monduy at Nicklaus Children's Hospital.
"He was in a wheelchair and then ultimately continued to progress to the point that he was arching back constantly and twisting, and even sitting in a wheelchair became very, very uncomfortable for him, so he was mostly bedridden at that point," Dr. Monduy said.
Testing revealed that Tamryn's dystonia was caused by a genetic mutation known to respond to deep brain stimulation. Dr. Monduy explained the procedure:
"This (device) gets implanted typically under the skin in the chest area or perhaps in the abdomen. And then there are cables that are going to be connected to this. Those are the leads and those are going to be tunneled under the skin, through the neck area and then through the skull into the brain," she said. "They're going to go deep in the center of the brain, so sort of like one on each side for each half of the brain."
The device delivers electrical impulses to regulate abnormal brain signals, often used to treat dystonia, Parkinson's disease, and epilepsy.
A new normal
"It was a really hard time, but now his cheerful self is back," Tamara said.
It can take six months to a year to calibrate the device properly, and settings can be adjusted through an app. Tamryn and his family continue to make the long drive for checkups, but he now enjoys a typical childhood—riding his bike, drawing cartoons, and playing video games.
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