Julie is living well with Arnold Chiari Malformation and Syringomyelia.
Julie Newberry is a 34-year old mother of two girls who has been married to her husband Denny for 12 years. For the last five years, Julie has worked from home as an Office Manager for Brant Driving School. It is a driving rehabilitation resource, teaching people with disabilities how to drive accessible vehicles. Julie initially met Tim Brant, the owner of the company, when he taught her how to drive using hand controls.
As Office Manager, Julie is in charge of scheduling driving lessons, reaching doctors regarding clients, assisting clients in securing the funds they need, and working with the Office of Vocational Rehabilitation to coordinate accessible driving services.
“I love working from home,” states Julie. “It allows me to work at my own pace and take breaks if I need one due to my condition.”
Julie’s condition, Arnold Chiari (Kee-AR-ee) Malformation, took eight years to be properly diagnosed. It is a condition that affects the part of the brain that controls balance. Julie’s brain came down into her spinal cord, forcing pressure on her body. As the pressure started to build, it blocked the flow of the fluid that surrounds and protects the brain and spinal cord. As a result, Julie underwent decompression surgery to have two vertebrae operated on.
In addition to having Arnold Chiari Malformation, Julie developed Syringomyelia as a result of the Chiari Malformation. Syringomyelia is a chronic disorder that involves the spinal cord, and causes nerve damage throughout the body.
Julie with her husband, Denny.
But Julie hasn’t let the surgeries, placement of shunts, and disability stop her from working, or anything else. “I can’t determine the temperature of water or tie my shoes, but I can be a great mother, wife, worker, and sister,” says Julie proudly.
Although Julie is not able to braid her daughters’ hair, she provides a lot of support to them and their interests. Bailie, age 8 and Amber, age 10, are very involved in activities with the help of their mother. From basketball and cheerleading, to soccer and Girl Scouts, Julie is right there encouraging and cheering them on.
Julie says that having a great family support system really makes living well with a disability possible for her. “Don’t dread having it; instead, have the mentality that it is what it is and find ways to overcome and develop a support system!”
For more information on Arnold Chiari Malformation and Syringomyelia visit www.asap.org.