A Family’s Journey: The Hegazys

The Hegazy family at the aquarium

Like typical sisters, Lily and Talia Hegazy fight over their toys. They are 3-yr-old twins who are learning to negotiate their way with each other and their big brother. Not so typically, Lily was born with a condition known as anophthalmia, and Talia was born with periventricular leukomalacia (PVL).

Anophthalmia is the absence of one or both eyes. Lily has no right eye, a deformed left eye, and no optic nerve. PVL is a type of brain damage in infants involving small areas of white matter. Talia’s parents were told that she would eventually develop cerebral palsy (CP). Lily and Talia spent the first 30 days of their life in neonatal ICU. To complicate matters, the girls’ parents were living on two different continents.

Prior to the birth of the twins, Nour Hegazy and her husband Ahmed, who goes by his last name Hegazy, were living in Egypt with their son Youssef. Nour was working on a master’s degree in nanotechnology when she became pregnant with the girls. Then Nour’s sister was diagnosed with a brain tumor. They had an uncle living in Atlanta, so when her sister decided to come to Georgia for treatment, Nour put her own schooling aside so she could accompany and support her sister. The twins were born here and Hegazy remained in Egypt so he could keep working.

Lily with a therapist at Frazer

Nour studied all she could about teaching children with visual impairments while closely observing the girls’ development. Although Talia had some minor speech delays, she was not showing any signs of CP. In fact, Talia was helping Lily learn to communicate, make associations, and stand up for herself—if Talia took Lily’s toy, Lily would cry, and Talia would give the toy back. Nour was determined to find a learning environment where the girls could stay together and where Lily would be encouraged to participate with other children as well. According to Nour, educational opportunities in Egypt for children with disabilities are virtually non-existent, yet the search for a daycare center in Atlanta proved to be its own challenge, as time after time Nour was turned away by centers that were unable to accommodate Lily. She finally found a place that said yes, but it turned out that Lily was not being engaged in classroom activities. She was essentially being left behind.

Then Frazer called. Nour had applied a few months earlier, but the girls had been put on a waiting list. As soon as an opening was available, Nour jumped on the opportunity. April Jones, the girls’ lead teacher, continually studies ways to adapt lessons to help Lily learn and grow. April works with the administrative staff as well as Annie Brown, the Inclusion Consultant from Frazer’s partnership with the Adaptive Learning Center, so that Lily and Talia have a unified support network. The Frazer team “was really welcoming,” says Nour. “I wasn’t expecting that all this effort would be put toward them.”

Talia with a therapist at Frazer

Hegazy reunited with his family in Atlanta in 2016, and Nour has now almost completed her master’s in chemistry from Georgia State University where she also teaches. It’s been a hard journey, and Nour and Hegazy’s battles are not over. With the help of Pam McClure, Frazer’s Child Development Program Director, they are working to find an inclusive learning environment within the Atlanta Public School system, which is their legal right accorded by the Americans with Disabilities Act (ADA). As they run into obstacles, Team Hegazy continues to find a way to overcome.

Nour gratefully acknowledges the miracles that continue to happen along the way, not the least of which are the milestones that Lily and Talia have achieved since coming to Frazer. Talia has been able to transition out of several of her therapies. And Lily’s peers play no small role in her milestones. When they see Lily struggling with something, they come over and pat her on the back for comfort. When they see her succeeding at something that has been a challenge, they cheer and celebrate along with Lily and their teachers. These 3-year-olds may not be able to articulate the meaning of the word “empathy,” but they can show us how to live it.