Boy With Rare Disorder Declared 99% Cured

Monday, June 24, 2013

An east Cobb family had a lot to celebrate this weekend after learning their son, who was diagnosed before birth with a rare neurological disorder, can now run and play without fear that a bad fall may trigger a stroke or seizure.

Garrison Duncan, a 7-year-old Shallowford Falls Elementary School student, was diagnosed with a Vein of Galen malformation in his brain while still in the womb. When he was born in 2005, he was the only baby in Georgia diagnosed with the condition. Doctors said he wouldn’t live past 8 months old.

“Imagine a Spaghetti Junction with no exits. His arteries and vessels grew together in his head,” Deitra Duncan said of her son’s potentially lethal diagnosis.

Last week, Garrison underwent the last of 11 procedures to correct the malformation. The groundbreaking medical remedy, performed by Dr. Alejandro Berenstein at a New York City hospital, required injecting microscopic amounts of medical-grade superglue into Garrison’s brain to close off some of the vessel routes.

Duncan said doctors gave her the thumbs-up last Monday following the eight-hour surgery that Garrison is 99 percent cured. After living in fear that her son could potentially have a stroke or seizure at any point during his life because of the condition, she decided to have a party Saturday after hearing the good news.

“It’s definitely something to celebrate,” she said. “I want people to know these kids (diagnosed with Vein of Galen) are living. There’s a lot of babies who don’t make it, but my husband and I are fortunate because we had the best doctors.”

Duncan, who is an English to Speakers of Other Languages teacher in Cobb County School District, said travelling back and forth from New York City has cost her and her husband, Larry Duncan Jr., an IT specialist, an extraordinary amount. She gave a special thanks to the Ronald McDonald House, which typically provides housing for families of children with cancer during treatment, since the nonprofit extended its reach to the Duncan family.

“It’s been worth it just to know that I don’t have to worry when he goes to school, that I don’t have to worry about any blows to the head anymore,” she said.

Duncan found out her son had the rare disease when she was 36 weeks pregnant, when a doctor detected what was originally believed to be a second heartbeat during an ultrasound. That second heartbeat turned out to be a blood clot at development of the malformation, which caused Garrison’s heart to work overtime to try to compensate.

“As a mom, you’re panicked,” she said of the diagnosis. “You’re not comfortable leaving your kid anywhere.

At the time, she said only 20 babies a year were diagnosed with Vein of Galen

But after the all-clear, Duncan said she’s much more comfortable letting Garrison play sports. Due to his athletic talents in soccer, baseball and basketball, Duncan calls her son a “modern-day Bo Jackson” — the only athlete ever to be named an All-Star in two major sports.

“He also loves football,” she said. “He’s always wearing his (New England) Patriots helmet and shirt.”

Moving forward, Duncan said she hopes to raise more awareness about Vein of Galen through a book titled “Vein of Galen Babies,” which she plans to self-publish. The book will tell the stories of several other children throughout the United States who have been diagnosed with Vein of Galen. Proceeds from sales will go to the Hyman-Newman Institute for Neurology and Neurosurgery, the medical center at Roosevelt Hospital in New York where Garrison underwent surgery. Also called the INN, the institute is considered one of the top medical institutions specializing in the treatment of neurological disorders in adults and children.

“I’m gonna fight until every baby is healed,” Duncan said.

Contact
Megan Thornton 770-428-9411

Source: MDJonline

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