CAS CONNECT 2013

5 Trey is now 8 but has been walking for only two years. Younger brothers Luke and Zach keep close watch on their older brother, who cannot talk. Trey has frequent seizures and regular trips to the emergency room. In 2008, Vennerberg and XTO gave $1 million (matched by Boone Pickens and the state of Oklahoma to make it a total $4 million gift) to OSU to create three endowed faculty positions in microbiol- ogy and molecular genetics, psychology, and art. The Vaughn “Trey” O. Vennerberg III Chair in Bioinformatics and Molecular Genetics, held by Robert L. Burnap, is named for Vennerberg’s oldest son. Vennerberg also chose subjects dear to him for the other two chairs: the Vennerberg Professorship in Developmental Disabilities in Psychology, held by Larry L. Mullins, reflects the oilman’s bachelor’s degree in psychol- ogy. And he is an art collec- tor, hence the Vennerberg Professorship of Art, held by Rebecca Parker Brienen, an art historian who special- izes in 17th-century Dutch art and museum collections and history. All three posts are the first endowed chairs in their departments. Still, it’s the chair in genetics that is closest to Vennerberg’s heart. “I want to give other families hope,” he says. “I want this gift to improve the quality of life for individuals with genetic disorders, as well as give hope to their families.” Today, Trey is doing well. In August, Trey’s pediatri- cian commended the family for the extraordinary prog- ress the boy has made through intensive therapy and stimulation. “He is never down, never discouraged and never gives up,” his father says. “And while he cannot talk, he can express his feelings, and he is always happy.” Trey loves guitar music, other people’s eyeglasses, riding in a car, swimming and the movie Mary Poppins , Vennerberg says. He is enrolled in a special-needs class at an elementary school outside Dallas. Vennerberg is blunt about the enormous resources it takes to raise his special- needs son. Trey needs 18 hours of supervision a day, which includes three full-time nannies and others, he says. The nannies, who happen to be three sisters, have a great bond with his sons, Vennerberg says. The family’s support system includes his sister and her husband, two nieces and friends, as well as the boys’ godparents, who are also family members. Meanwhile, Vennerberg says, he is having fun watch- ing his sons grow and develop — and just like any other parent, it’s not always easy. He continues to work at his newest venture, MorningStar Partners, but these days, it’s on a more flexible schedule. His days now include drop- ping kids off at school, riding bikes and organizing birth- day parties and swimming lessons. He’s learned about Dora the Explorer and her adventures, thanks to Luke and Zach’s summer camps, and the family enjoys attend- ing Texas Rangers baseball games. “Luke and Zach look out for their older brother every day,” Vennerberg says. “They do not understand the details of his issues, but they do know Trey has special needs, and they know a family is a place where people take care of each other. “Every once in a while, I get to close my door and have a little quiet time to myself,” he says. But he doesn’t care if he has much privacy these days. “You just plow in and make it work. It’s hard to imagine what life was like without my sons. They are my greatest blessing.” The oilman sought out the best geneticists in the coun- try. They mapped out Trey’s chromosomal disorder, find- ing no chromosomal abnor- malities in the family tree. Trey’s genetic disorder just happened, and nobody can say why. The syndrome is so rare that it doesn’t carry a name, only a number. The long leg of his chromosome No. 1, band 31.1 through 32.1, is missing. So far, Vennerberg has found only one, perhaps two, other children in the world born with the same genetic deletion. “ I want to gi ve other fami l ies hope. I want thi s gi f t to improve the qua l i t y of l i fe for indi v idua l s wi th genet i c di sorders, as wel l as gi ve hope to thei r fami l ies.” — Vaughn O. Vennerberg I I