Beautifully Rare Daughters Inspire Parents’ Dream

by Julie White, The Resource Exchange

Upon introduction, it’s obvious that 15-year-old Vina and 11-year-old Lena have bright smiles and personalities to match. The Gozeh sisters have also spent more time in emergency rooms than most people will spend in a lifetime.

Their parents, Nazar and Sana Gozeh, came to the U.S. from Iraq over 25 years ago. Nazar earned a Masters in electrical engineering and worked for the U.S. State Department. The couple was excited for a new life in America, including starting a family. What they didn’t anticipate was being full-time caregivers.

Both Vina and Lena were born with pyridoxine responsive epilepsy, a rare genetic syndrome. They also have autism, intellectual delays, and speech, behavioral, and sensory differences. As children, both experienced up to 100 seizures a day.

“We were brought to our knees,” Nazar recalls. “We almost filed for bankruptcy. I resigned from my work. My wife could not work. About four years ago, our daughters’ conditions were diagnosed, and medication was prescribed. This was life changing – the seizures came down from 100 times a day to none!”

The girls qualified for services through The Resource Exchange, a local nonprofit that provides care and case management for the disability community. Nazar adds, “In addition to speech and physical therapies for the girls, we as parents get respite care. For the first time in 15 years, I was able to take my wife for dinner and a movie!”

While it was once impossible to imagine, Nazar and Sana are now pursuing their American Dream. Inspired by Vina and Lena’s love of decorating, Nazar and Sana launched Insta Balloon Creation. The colorful balloon creations have been displayed at schools, the U.S Taekwondo Center, and New Altitude Coworking and Office Space during a broadcast of “Speed Networking with The Next Mayor.”

They hope to one day start a foundation to help children with disabilities around the world. “Our focus will be on war-torn countries,” Nazar says. “As our lives have been changed, we want to help change the lives of others.”