Teen imprisoned by rare brain disorder finds freedom

He was a typical teenaged boy...until he began to lose his ability to speak. Jeremy Obata’s parents went from doctor to doctor, searching for answers. It was at Emory Brain Health that Jeremy received an unexpected diagnosis and began the fight to reclaim his voice, and his life.

By the time then 17 year old Jeremy arrived at Emory Brain Health, his speech was all but gone, imprisoned by dystonia, a movement disorder that made his muscles contract uncontrollably.

He had withered away, leaving school, becoming a recluse as his family desperate searched for answers. In video taken at his first appointment, he cannot even count to ten. His mouth works and his head jerks from the effort of trying to force the words from his mouth, but they do not come.

The genetic degenerative brain disease that affects only 3 in a million people, causes iron to accumulate in the brain. Deep brain stimulation surgery was suggested, rarely used for this disease.

Neurosurgeon Dr. Robert Gross performs Jeremy’s surgery in an MRI scanner. Gross explains, “There’s an area in his brain deep in his brain that is not functionally correctly. We put the electrodes in. We connect them to their own power supply and they fire up impulses into the basal ganglia, and those impulses override the abnormal activity that’s present in his basal ganglia.” Dr. Gross is a faculty member in the NS program.

After surgery, Jeremy returns to brain health for a check up. This time he walks up and down a hallway, his gait normal.

Click here to view the full story on WXIA-TV 11 Alive.