Born with a rare genetic defect, photojournalist Nadia Zomorodian never quit fighting

When I was a child, the doctors told my parents that I would never graduate high school, never hold down a job and never be able to drive.

Why? Because I am approximately one out of every 4,000 people born with a genetic defect known as 22q11.2 Deletion Syndrome. It's also known as Velocardiofacial Syndrome or DiGeorge Syndrome. I am the only one in my family to have this condition.

At 8 months, Nadia had to have a machine to help her with her apnea.
At 8 months, Nadia had to have a machine to help her with her apnea.

The syndrome is caused by a small missing piece of the 22nd chromosome.

This tiny missing portion of chromosome 22 can affect every system in the human body. 22q can be the cause of nearly 200 mild to serious health and developmental issues in children. Luckily in my case, I had mild to moderate issues compared with some others.

A rough start

I was born six weeks premature, weighing 5 pounds, 1 ounce, and went into open heart surgery when I was three days old because of a congenital heart defect. I've been a fighter ever since.

When I was sent home, I was placed on an apnea monitor for the first eight months of my life. When I was 2, I had surgery to fix my palate. It was not closing and I was aspirating liquids which caused me to have pneumonia 12 times by the time I was 2 1/2 years old.

At the age of 3, Nadia had surgery to fix her palate.
At the age of 3, Nadia had surgery to fix her palate.

My parents were referred to a geneticist to find out why I was having so many health issues. I saw Dr. Robert Gorlin in Minnesota where I was born. He took one look at me and told my parents, “She has Velocardiofacial Syndrome.”

The doctor showed my parents photos of other children with the syndrome and they have a lot of similar facial features. At the time, the syndrome was not well known and the prognosis was not encouraging.

Tough times in school

Growing up, school was a challenge because I have a learning disability which is part of the syndrome. I was in exceptional student education (ESE) classes from elementary school through graduation, but I also attended regular classes. The only ESE classes I was in were mathematics and English.

I qualified for a special diploma during my final years at Spruce Creek High School but declined to accept it. I could not get a traditional diploma because I could not pass the Florida Comprehensive Assessment Test (FCAT) in reading and math.

But in my senior year after multiple attempts at trying to pass the FCAT, I decided to take the ACT and SAT college entry exams. I passed the reading and math sections which allowed me to override the FCAT and get a regular diploma.

After high school, I went to Daytona State College to get an associate’s degree in photography, which is my passion. But by graduation, I fell out of love with photography because shooting weddings and portraits were not my thing. In 2019, I decided to go back to school because I fell in love with the world of photojournalism.

In December 2021, Nadia graduated with a bachelor's degree from the University of Central Florida.
In December 2021, Nadia graduated with a bachelor's degree from the University of Central Florida.

I worked at NASCAR for three years, which helped me realize there is another world of photography. The photography program at Daytona State College posted a job position for interns to earn class credit at the Daytona Beach News-Journal. I was determined to get the job and my hard work with NASCAR paid off.

Favorite photographic subjects

I enrolled in the photography program at the University of Central Florida. In my first year, I worked as an intern for class credit at the paper where I grew as a photojournalist. My two favorite subjects to photograph are police and firefighters. I love to show the world behind the scenes how these brave men and women sacrifice their lives for others.

My brother Kayvan was a firefighter for Port Orange and is now a battalion chief for Reedy Creek Fire Department. My cousin Arleen Redmond is a lieutenant for Volusia County Fire Rescue. I also photograph events for Volusia Sheriff Mike Chitwood, which is one of my most significant accomplishments because I get to see the world from a different perspective.

Nadia Zomorodian, May 30, 2023.
Nadia Zomorodian, May 30, 2023.

For the past three years, I have been a freelance photographer for the Daytona Beach News-Journal where I am hoping to make working at the paper a full-time career.

My message to children and adults who have been told they can’t do anything is you can do whatever you set your mind to.

Do not let failure ruin your dreams, let failure make you stronger. Despite having this syndrome, I never gave up. I recently signed up for my first marathon, where I will be running for kids with 22q.

For more information about the syndrome, visit this website and listen to the 22q podcast.

Nadia Zomorodian is a freelance photographer for the Daytona Beach News-Journal and a fighter who never gives up.

This article originally appeared on The Daytona Beach News-Journal: Photojournalist never let a rare genetic defect keep her down