Teen suffers from rare disease, gets treatment in Charleston

CHARLESTON, SC (WCSC) - At nineteen years old, Columbia native Jimmy Webster has already been through so much – including two strokes, two surgeries, and one rare diagnosis.

Webster was diagnosed with Moyamoya Disease three years ago.  Since then, he has made a weekly trek to Charleston to receive treatment at MUSC.

"Moyamoya is a disease or a syndrome where the two main arteries that provide blood flow to the brain progressively narrow, then begin to occlude causing a reduction in the blood flow to the brain," Alex Spiotta, MD, says.  Dr. Spiotta, the Neurosurgeon Co-Director of the Neurointensive Care Unit at MUSC, is one of Jimmy's doctors.  He says MUSC has the only center able to treat Moyamoya patients in South Carolina.

"What we can do is provide options with medical and surgical procedures to try and prevent strokes and bleeding episodes from occurring," he says.

Despite the frequent hospital visits and T-shaped scar on the side of his partly shaved head from a recent surgery, Webster says there is a silver lining to the treatments.

"I wasn't very good at art or anything," Webster says of the time before his surgeries.  "I couldn't read sheet music or understand the concept of it.  Then [following the procedures,] I was like, I finally get it."

Webster's mother Melissa agrees with his heightened sense of creativity.

"He plays the piano now, which he had never even been introduced to the piano," she says. "He could never read sheet music and it just comes naturally to him now."

Dr. Spiotta says the two sides of the brain have different functions.

"But often when we do a procedure like a bypass and increase blood flow to the brain, they'll notice an improvement," he says.

Webster recently underwent a second surgery and is awaiting test results to determine if the disease is affecting his kidneys.

Copyright WCSC 2013. All rights reserved.