Vernon boy with multiple birth defects to take center stage at Olympics

Source: NJ Herald
For most of his young life, Darius Ziabakhsh’s travels have revolved around visits to doctors and hospitals in faraway places for treatment of a rare medical disorder he’s had since birth.
But the 9-year-old Vernon Township resident and his family will be leaving for the trip of a lifetime to Rio de Janeiro, where he’ll stay for eight days and appear Friday in the opening ceremony of this year’s Summer Olympic Games.
Darius was given a send-off at the McDonald’s restaurant in Franklin on behalf of Ronald McDonald House charities, the sponsor of his trip. The nonprofit foundation’s mission is to provide a home away from home for families of seriously ill children.
Like many kids his age, Darius recently developed a love of the smartphone app Pokemon Go. But intermittently, he’s had to put soccer, school, fun and friendships aside while undergoing more than 30 medical procedures to date, including 10 major surgeries. He was born with a rare combination of birth defects known as VACTER.
According to Cincinnati Children’s Hospital, the “V” in its name stands for vertebrae, which denote the bones of the spinal column; “A” stands for anal atresia or imperforate anus, which is the term for an anus that does not open to the outside of the body; “C” stands for cardiac anomalies; TE stands for tracheoesophageal fistula, which refers to an abnormal connection between the tracheal windpipe and the esophagus; and “R” stands for renal or kidney anomalies.
When she first learned of Darius’s condition, “our lives were turned upside down,” his mother Tracy Smith said. “It’s been a rough road, and the surgeries he’s had to undergo have been heart-wrenching, but at the same time I truly feel like the strength he’s shown and what he’s brought to the world have made us better people and better parents.
“As Darius gets older, he’s continuing to accumulate diagnoses. Unfortunately, it’s not a condition that will ever go away unless they come out with a cure, which we’re still hoping for, but the program they’re developing will at least help make the transition from pediatric to adult doctors a bit easier.
“We’re all very thankful and have open hearts and wear our emotions on our sleeve,” Smith adds. “Many days for us have been so tough, but there’s worse things in life, and I can’t say enough to thank Ronald McDonald House.
“For us, it’s usually a medical trip that we go on. But now for the first time, Darius will be able to say he’s going away to represent his second family and to represent the U.S.A.”

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