In December 2009, Connor Ventura, a senior and soccer player at North Hunterdon High School and Union Township resident, found out that he had a rare brain condition called Arnold Chiari Malformation. He underwent brain decompression surgery at The Weill Cornell Brain and Spine Center at New York Presbyterian Hospital. Fully recovered and considered extremely lucky, Connor decided to give back to the center that saved his life. He raised over $8,000, which the Weill Cornell Center will use to create a website where pediatricians can learn more about Chiari Malformation and for research into the rare condition.
“It was frustrating to me that most people have never heard of Chiari. I emailed hundreds of people asking for donations. Not only did everyone learn about Chiari, but they donated to my worthy cause. I’m still hopeful to continue my fundraising efforts throughout my senior year,” said Connor Ventura.
Though having the malformation most likely since birth, it was not until a soccer game at a college showcase tournament in Phoenix, AZ on December 9, 2009 that Connor experienced concussion-like symptoms, which sent him to the hospital. A MRI indicated the Chiari Malformation. According to the Weill Cornell Department of Neurological Surgery, “a Chiari malformation is a structural abnormality at the back of the head. Normally, a large hole in the base of the skull accommodates the connection between the brain and spinal cord. This connection point is surrounded by fluid that can move freely between the head and spine. In someone with a Chiari malformation, the back of the brain (the cerebellum) is pushed down through this opening, creating pressure on the spinal cord and restricting that fluid movement between the head and spine. That pressure leads to a wide variety of symptoms, the most common being headache and neck pain, which typically gets worse with exertion (exercise, coughing, sneezing, and even laughing). Another frequent complaint is temporary tingling or numbness in the hands and fingers.”
Connor had surgery on December 21, 2009 when Dr. Jeffrey Greenfield expanded Connor’s skull. “After surgery, I realized how fortunate I was and I needed to prove to myself that I could get back on a soccer field again. I wanted to be an inspiration to other Chiari patients that there is life after brain surgery. The surgery has had a profound effect on who I am today. It had made me more mature and empathic towards people with health problems and disabilities,” said Connor.
North Hunterdon High School Head Boys Soccer Coach, John Simpson, has been impressed with Connor’s determination and recovery. “Connor means everything to our team. He is the guy all of our younger players look up to both for his play and for the example he sets on and off the field. He has played varsity since his freshmen year, but has experienced some form of injury or setback during each of them including major surgery. A lot of kids would have stepped away from the game either for self preservation or frustration, but Connor loves to compete, enjoys the camaraderie of his teammates, and refuses to give up. We are blessed to have him and it has been an honor to be his coach for the past four years.”
In June 2011, Connor Ventura received a Leadership Award from New York Presbyterian Hospital to thank him for his fundraising efforts. The award was given at a “Lids for Kids” event in Central Park, which raises awareness of head injuries. Many kids who have had numerous surgeries or who are very ill were in attendance, which Connor said had a profound impact on reminding him how fortunate he is.
Connor Ventura was named Boys Soccer Player of the Week by the Express-Times for the week of September 19. During that week, Connor had an assist in the game on September 17, and then scored winning goals in the games on September 20 and 22.
To learn more about Chiari Malformation, please visit the Weill Cornell’s website at: http://www.cornellneurosurgery.com/chiari/.
To read Connor’s patient story and learn how to donate, please visit: http://www.cornellneurosurgery.org/ways_to_give/patient_ventura.html.