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Sturge-Weber syndrome
Zaylan Jones

Zaylan Jones showed signs of delayed development at an early age. At 10 months old, he struggled to walk and talk and sit up on his own. One day, when Zaylan began running a fever, seizing and vomiting, his mother, Linda Swain, rushed him to their local emergency room. Doctors, unable to determine what was going on, sent Zaylan to Children’s of Alabama in Birmingham, but even at Children’s, doctors were unable to give an immediate diagnosis.

“Nobody could determine what was going on,” Linda said. “Multiple doctors were brought in to see Zaylan, but no one was able to pinpoint what was wrong with him.”

Zaylan was eventually rushed back to Children’s after having multiple seizures at home. Zaylan and Linda were met by a familiar face, pediatric neurologist Dr. Monisha Goyal, who first mentioned the disease that possibly ailed Zaylan – Sturge-Weber syndrome (SWS). “She was a godsend,” Linda said of Dr. Goyal. “She gave me hope that we could get this figured out and get him well.”

Dr. Goyal brought in multiple doctors, and after running several tests, Zaylan was officially diagnosed SWS, a neurological disorder that caused his body to produce more blood vessels than his brain needed. Doctors also determined SWS caused Zaylan to have seizures while sleeping. After a discussion with pediatric neurosurgeon Dr. Jeffrey Blount, Linda knew surgery was the only viable option. “The doctors were afraid that one day he would seize and not wake up, so it became clear to me, to everyone, that he needed surgery,” Linda said.

Zaylan underwent two surgeries in a seven-day period, the first to pinpoint the problem and the second to remove the excess blood vessels in his brain. “The surgery went great,” Linda said. “He has been seizure-free ever since. But because the disease affected a particular portion of the right side of his brain, Zaylan was given just a 1 percent chance of relearning some fine motor skills such as tying his shoes or feeding himself.”

Despite the odds, Zaylan persevered. He endured speech therapy, physical therapy and occupational therapy, making the trip to Children’s every single week. He still has some delays—the surgery caused him to lose some of his vision and the hearing in one ear—but Zaylan has regained most of his fine motor skills and is back in school. Linda credits Dr. Goyal, Dr. Blount, and the many other doctors and nurses at Children’s for that blessing.

“When you’re just waiting on a diagnosis it’s so difficult. It’s so easy to just lose all hope,” Linda said. “But the doctors at Children’s never gave up. They stayed with it and figured out how to make Zaylan better.”
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