Zahra I. was born by cesarean section at 8 months and 10 days weighing 4.4 lbs on July 2, 1983 in Tehran, Iran. When the doctors delivered me, I was cyanotic (bluish color) due to being deprived of oxygen. I was diagnosed with a rare syndrome called Freedman Sheldon Syndrome (or known in laymen’s terms as Whistling Face Syndrome). Due to this syndrome, I was born with a little tiny hole for my mouth so I had to be fed with an eye dropper. A few months after I was born they did surgery to construct a mouth for me. I also had severely clubbed hands due to the syndrome so I had surgery to fix those as well as many other small surgeries.
As time went on, it was clear to my parents that I needed specialized care and many more surgeries, however Tehran was not the place to have them. The advanced technology that we have here in the United States was pretty much non existent during that time in Iran. My parents started the process of obtaining a visitors visa so they could bring me to the states to get the care that I so badly needed. Finally at the age of 10 months, we came to the states with that visa. We stayed with my moms brother (my uncle) in Woodland Hills during the duration that we were here. My dad unfortunately was only able to stay a short time (6 months) because he worked for the Iranian Airlines and had to return to work. My mom stayed back with me for about a year or so longer.
During our visit I saw various doctors and specialists. I had more surgeries to correct things that were done in Tehran as well as a few new ones (face, feet). Then at a year and eight months I was sitting at the table with my family eating dinner. My mom gave me a small piece of a pickle to which she hoped I’d just suck on, but to her dismay, I ended up swallowing it and started choking. I stopped breathing and turned blue instantly. Everyone was in a panic. They started doing CPR but to no avail. The ambulance was called but it was going to be some time before they got there. Time was not on their side. I had stopped breathing for a while now. I needed to be rushed to the hospital and FAST! So my uncle decided to drive me there in his car to Children’s Hospital of Los Angeles. We got there and they instantly rushed me into surgery. My mom and uncle were beside themselves with worry and panic.
After sometime the doctors came out and said that they were able to successfully revive me and got the piece of pickle out but it was no easy feat. My mouth doesn’t open very wide due to the syndrome which also leaves me with a very narrow throat. They had to put a Tracheostomy tube in permanently because if I ever needed any more surgeries, I would most likely not survive.
After the stay in Children’s hospital, my moms visa was going to be expiring soon and she would have to return back to Iran. She knew that there was no way she would be able to take me back with her because ultimately I would not survive long. She decided to make it her mission to find me a home before she left back to the country.
Several doctors told her that she’d never find me a place to go and that I would have to be placed into a facility for kids like myself in San Luis Obispo. A place where no one loves or takes care of the children. They lay in cribs all day and are essentially in vegetable states. There is a constant revolving door of staff that just comes to do there job and be gone. No way in HELL was my mom going to let this happen to me!!! She knew that I had more in me. I was not going to be another statistic or become a vegetable. She knew in her heart of hearts that her daughter was smart and was going to succeed in life despite what doctors told her.
Then one day my doctor told her about a lady named Carolyn who was a foster parent. She lived in The Antelope Valley. She already had several children that he had placed with her. He made a phone call and told her about this little girl that he had available to be fostered, explained my mom was here on a visitors visa from Tehran, that her visa was going to be expiring soon and that she wanted to find a home for me before she went back. Carolyn sadly had to turn him down. She was not in a position at the time to take in anymore children. Her husband had just had a terrible accident with a band saw where he had severed three of fingers and was in a full arm cast.
When you foster you can only have a certain amount of children in your home for safety reasons. So time ticked on and my mom was getting very worried she would have to leave me without finding a place for me. Several months later that same doctor called Carolyn again and reiterated what he had told her before. He begged her to come to at least see me. She agreed. Of course when she saw me she fell in love.
I had a head full of jet black curly hair and big brown eyes. How could any one resist that? So that night she went home to discuss it with her husband and the rest of her family. Despite every ones concerns with my health, she decided to go with her heart. She wanted me!!! She came to the hospital to see me and met my mom. As you can imagine my mom was so overjoyed at the fact that she had found her ONLY child a place to live. Her baby girl was going to have a family.
The doctors, my birth mom and Carolyn all made plans for me to come to the house. It was only a few days later that my mom brought me to what would be my new home. It took me sometime to adjust but I was a pretty friendly easy going baby as it was. I took to Carolyn right away. My birth mom was so happy, yet so very sad because she knew she’d have to leave me behind and travel back to Iran without her only child in just a few short days. She gave me a kiss, said her goodbyes and then snuck out of the house so that I wouldn’t see her.
The next day my mom called to check up on me. Carolyn told her I was getting along with my new brothers and sisters fine but that I cried all day and night because I only spoke my native language (Farsi). Nobody could understand me or knew what I wanted. So Carolyn asked if she could come see me once more before she boarded her plane. Respectfully, Carolyn told her that it was probably not a good idea. I was pretty much used to everyone by now. Seeing my mom would just make it harder for me. She did agree to take me to a park to play so that she could see me from afar so that’s what we did.
My mom came, watched her baby girl play from afar and cried tears of sadness and joy. She then left and went back to Iran and left her precious daughter behind. She checked up on me regularly during my years of growing up. My mom filled her in on my “firsts” and sent her stuff in the mail (pictures, school drawings, etc). When I got a bit older she came to visit me. Although her visits were few and far between (every 4-5 years or so) she still tried to come when she could. It was very difficult to come here. Each time that she had to leave me behind was like a knife in her heart. She missed me so very much and life was very lonely for her without me.
Fast forward to age nine. I had to wear braces on my legs because I was born with clubbed feet. I also had to wear a back brace because I had sever scoliosis. Eventually I had a spinal fusion surgery that entailed NINE hours. Afterwards I was in a brace for several months. Surgery was a success though. Spine is still a bit curved but it’s a lot better than it was before surgery. As time continued to go on, I was having trouble walking. I was in lots of pain and couldn’t walk more than a half hour. I saw a doctor at the age of twelve. They suggested feet amputation. That sounded extremely scary. I had to make that decision on my own as only I could. I decided to go for it and underwent a 7 hour surgery for that as well, was in two full leg casts up to my thighs for an entire month, and then dealt with two rounds of infections in one stump.
Finally I was ready to be fitted for my very first pair of Prostheses’s. I was told I would need several months of therapy, be in a wheelchair for sometime, and need a walker for about six months. But I am a fighter. I put those prosthetics on and WALKED right away on my own!!! Not ever having prosthetics before. I didn’t have any therapy, didn’t use a wheelchair and didn’t use a walker. I have had prosthetics for nineteen years and recently just received my 4-5th pair. I am doing wonderful with them.
I am now thirty-one years old, I live on my own. I was attending a Jr. college and was working towards a certificate to become a Paralegal but have decided to put that on hold because I have started acting. I just finished shooting my very first movie of my acting career in October of 2014 which is soon to be out any time!!! I am almost done with post production. It is a horror movie called The Horde and I play a mutant named “Baby Z.” I continue to go on auditions as they are presented to me. I hope to get more acting jobs in the near future.
I am a strong willed, healthy, intelligent woman who loves to dance, indulge in some good reality TV, cook, spend time with my puppy, friends and family. I don’t take life for granted because I know that I am a miracle! My life is blessed and I try to enjoy every second of life.