Zahra’s Story

Insert Alternative Text Here

Faces of the Foundation:
2015

Condition:
Freeman-Sheldon Syndrome

Resources:
Genetic Home Reference

WebMD

Freeman-Sheldon Research Group, Inc

 

Donate
Meet Zahra

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.

Zahra’s Photos

Zahra’s Blog

Loves2dance32

Hello everyone!!! Sorry it has taken me some time to update you all on what I've been doing here in Tehran. As you all know I arrived in Tehran after flying 2 days. ✈️ ?? It was a loooooong flight. I landed in Tehran at 12:30 AM on October 7th. Went through customs and got my FIRST stamp in my passport!!! ???? I was sitting in a wheelchair waiting for one of the staff members to come up behind and push me but to my fortunate surprise it was MY DAD!! I was so excited to see him. We got back to his apartment and stayed up til 5 am. Over the next couple of days we spent time at a friends house just hanging out and enjoying each other's company. My dad took me to a town called Lavason. We went to this restaurant that is a favorite of his. It was so good. However the jet lag for me for the first 3-4 days was KILLER! The day after I arrived I took a nap at 1:00pm. Woke up at 5:00 and my dad made me my most favorite meal. I barely took 2 bites. I was not even the least bit hungry. I didn't feel well at all and I was EXHAUSTED. I fell asleep in his chair for an hour until he woke me up to go to my bed where I knocked out at 7:00pm and slept til about 7:00 am. The next day or so I was still pretty jet lagged. My appetite was still not fully there and I was still pretty tired. That night though I slept over 11.5 hours!!!! Holy heck did I feel soooo much better. Now I'm pretty much on track. My appetite is back and I'm not as sleepy as soon. My dads got me on a schedule which is a first for me since I stay up till 3 am at home and don't get up til about 2:00 pm. Hahahaha yeah yeah I know. I'm lazy. ?? Saturday was a day for us to just kick back and chill. We just hung out at home. We packed for our trip that we planned to take on Sunday which is now today. Today we got up at 6 am, got dressed, packed the car and started our 3 hour drive to The Caspian Sea. We stopped near a river along the way and had our breakfast. The view was breathtaking. Afterwards, we headed back onto the highway up into the mountains towards Caspian. We stopped once more and had tea. The view there was just as breathtaking. Finally, after 3.5 hours or so we arrived at this GORGEOUS villa way up high in the mountains. The villa belongs to one of my dads friends. They graciously have let us stay here as long as we'd like. It's so nice inside. Wood stairs, big balcony, amazing view from the balcony, a fire place where you have to get actual fire wood! Just nothing I've ever seen. Over the next few days here in the Caspian my dad plans to take me to some popular hot spots. There's a forest around where we are that he's going to take me to. We are going to have lunch there. So far I'm having a blast! It's still so weird for me to believe that I am on the other side of the world in my birth country with my dad. It's wild! I miss my dog and brother soooooo much. My friends as well. And also my own bed lol. But I'm making so many memories here. I'm so happy I get to spend this special time with my daddy!!! He's missed his little girl. ?? I'll try to update again when I can. I'm not always in a place where there is wifi so unless I'm at my dads or his friends house, I can't get online. Hope you guys enjoy following me on my journey!!!! ☺️ Thank you again.

Reply

Loves2dance32

My journey to Tehran has officially begun! I departed yesterday at 6:45pm from lax and flew all into the night til 3:pm where I have landed in Frankfurt, Germany!!!! The flight was very nice. Probably the smoothest take off and landing I've ever experienced. International flights are so dope! I watched like 4 movies, listened to some music and tried to sleep as much as possible. I'm soooo glad to be off that plane though. For now anyways. Now I'm just chillin in the airport in Frankfurt and waiting for my connecting flight. I can't believe I'm here!!!!! In Germany. I never imagined I'd get to travel like this. It's beyond my expectations. I'll keep updated as I'm capable too.

Loves2dance32

Thank you!

Staff@SPSNFoundation

Have fun on your trip and be safe! Can't wait to hear all about your adventures!

Reply

Loves2dance32

I want share something that has been bothering me. I'm not looking to start any fights or debates. Just wanting to express my feelings on a subject that bothers me. I'm purely speaking from my personal perspective. My upcoming trip to Tehran has inspired me to write this post. As most of you know I am from another country. I am from Tehran, Iran which of course is in the Middle East. I came here as a child for medical reasons and have been here since. Both my parents are born and raised in the Middle East. My mom now lives here in the U.S. and is now a resident of the state. I'm so happy for that. There is SOOOOO much negative stigmas attached to that particular country. I realize that every country has their stigmas but I'm specifically speaking about the country that I am from. I hate that the September 11th attack on our country has magnetized a certain stigma. The stigma around the fact that all if not most Middle Easterns from Tehran are terrorists. This is simply not true. Yes, the terrorists were from a middle eastern country but they weren't from Tehran. They were from Afghanistan. People say "same thing." Actually no, it's NOT the same thing. It's an ENTIRELY different country and different culture. Hearing that response angers me to my core. ?. It's such an ignorant statement. In a little over two weeks I will be embarking on a trip to my home county for the FIRST time since coming to the states as a child. I'll be visiting my dad whom I haven't seen in 12 years. I couldn't be more excited!!!!!! I am so over joyed that I'll get to experience where I came from, especially getting to experience it with my dad. A native resident of the country. My best frieMegan Rifeeee made an excellent point. She told me that I will not only get to experience my county of birth, but I will get to experience it in a more personal way since my dad lives there and has most of his life. I won't be experiencing it in the typical "touristy" type of way. She's absolutely right! I never thought about that but it's so spot on. Ever since I learned I was going, I've told everyone that would listen. ???. I'm generally a chatty Kathy as most people know but I've been one more so since learning of this trip. I've gotten a LOT of mixed reviews. My friends have been INCREDIBLY supportive when hearing of my trip. They are so excited for me to get to have this once in a lifetime opportunity. Some family members have had some reservations regarding this trip. I'd like to think they are happy for me. I know they are worried for me and I naturally would expect that. I absolutely understand being worried for me about the normal things. Flying alone, staying the duration that I'm staying and even just being worried about being in another country in GENERAL. Not because of the specific country. But naturally I've gotten most of the negative responses from strangers. A couple weeks ago I went into Target to look for an outlet adapter. The lady asked where I was going. Without hesitation I replied with Tehran. IMMEDIATELY her demeanor changed. She replied "oh. Are you sure you want to go there?" I said "yes I'm sure. I'm very excited actually." She then said "well good luck. I'll pray for you." As nice as that sounds, I took it offensively. These are the type of reactions I'm so tired of. Why can't people just not say anything at all. I guarantee that if I said Tahiti, I'd have gotten a much different reaction. But because it's a middle eastern country, suddenly it's not so appealing or exciting. I feel that people are being judge mental due to the media portrayal about a place that I come from. It's reactions like these that make me feel ashamed of saying I'm from Tehran. I know I should never be ashamed of where I'm from but truthfully there are times when I am. I wish people could learn to open up their mind and eyes and educate themselves on things. Tehran is a BEAUTIFUL country!!! Does it have its bad parts? Of course. ALL PLACES DO. I've learned so much about my country from my parents in the last 6 months of learning I was taking this trip. Next time you say something, please take the time to stop and THINK how what you say could make someone feel. When you speak negatively about my country, you are speaking negatively about my parents and me. Keep that in mind. Again, this is MY own thoughts and opinions and what I live with.

Reply

Loves2dance32

I can't believe that in 21 days, I will be getting on a plane and embarking on my 6 week long trip. Seems like just yesterday, my dad and I were discussing whether or not I would be getting to come there. Now, it's about to become real!! It's crazy how your mind works when you are nervous about something. Lately I have been having bad dreams about my trip. In one of the dreams, I dreamt that I ALMOST missed my flight. I barely made it onto he plane. In my dream last night, I dreamt that I didn't have ANY of my luggage or my passport. People tell me that it's pretty normal to start having these types of dreams when something big is about to happen. I'm hoping that as the trip gets closer, I'll start having happier dreams. Thankfully though I am pretty much ready. I've purchased most everything that I needed and wanted to. With the exception of my personal items such as shampoo, body wash etc. I'm going to wait til a few days before to buy that stuff. Not having a car for almost a month and a half, its been super difficult to get out to get stuff done. But my brothers friend nicely took me out around town for a whole day so I could at least get some shopping started. I was actually able to get 90% of my shopping finished in that one day. Got some clothes, makeup, shoes, passport holder, purse, wallet, scarfs, neck pillow for the plane ride, a throw blanket and video camera. So I'm pretty much set!!!! Packing will be a chore!! I've never had to pack for a trip as big as the one i'll be taking. I've already told my brother that I will be needing his help...hahahah. I've slowly been seeing people before I take off. I know that I will be returning, but it's still very important that I hang out with some people before I leave. Alright well I think I have caught everyone up on what's been going on. The next time I post, I will most likely be a week to a few days out. Thanks everyone for caring and taking the time to read.

Loves2dance32

I am going to Tehran. I decided to go for that long because I feel like it's more than enough time to see lots of things. Plus I'll probably never get this opportunity to go visit there again.

Staff@SPSNFoundation

Sounds like your going to have fun on your trip! Where are you going and why so long?

Reply

Loves2dance32

As you all know from reading my story above, I filmed a horror movie. Its been in post production since we wrapped in October. We should be having a premiere party any time now. I was hoping it was going to be sooner than it has been. You don't realize how long it takes for a movie to be completed. I am just hoping that the premiere of my FIRST movie of my acting career won't be happening while I'm away over seas. It would be such a major shame if I missed it. As far as my acting career goes, its been VERY SLOW and nearly non existent right now. It's making me sad and discouraged. Am I meant to be an actress? Am I being impatient? Unrealistic about how things should happen? This business has tested my patience. I have a hard time waiting for things as it is, and want things to just happen. I feel like sometimes I bug and pester my agent with questions about whether or not she has any leads for me as far as jobs or auditions go. I'm pretty certain that I'm probably her only client to constantly asks. She just tells me to be patient and says that this is a rough business. I get that. It's very true. But I guess I just hoped that I'd have a little more auditions. Even if I don't get the jobs, I want to be auditioning..getting my face out there to casting agents. How will casting agents know who I am if I'm not going on auditions? But then again, how can I go on auditions if there are NONE to go on???? Ugh its such a vicious cycle. I hate this. I hate that it makes me question my ability. I KNOW I'm good at what I do. I am constantly told this. While I was filming The Horde, EVERYONE was telling me what an AMAZING actress I was. No one believed that I had never done this before. So if I'm as good as everyone says I am, why am I not getting work? I'm hoping once this movie comes out (which will hopefully be next year) that I'll get more work. That's what I keep holding on to. This movie is going to EPIC!!! Can't wait for everyone to see it and see me do what I love!!! On another note, I guess its a a good thing I'm not having any auditions. My brothers car is out of commission and don't know when he will be getting it back. I live 2 hours away from LA where all my auditions are always located and putting all those miles on his car that is older doesn't help any. I wish I had a person driver to take me to auditions. Hahahaha. That will make life so much easier. I'm also worried that it will get to a point where I'll have to stop acting altogether because of not having ways to get there. That thought makes me very sad because I haven't gotten to show the world who I am yet. I wanna do this for the long haul. Just don't know how and if it will be possible. :'(

Reply

Loves2dance32

The planning stages Hello SPSNFoundation world. Welcome to my very first blog. Here I will be sharing my journey of my trip overseas to my place of birth Tehran, Iran that I will embark on starting in October. I will be gone a month and a half. I’ll be sharing the planning of the trip, to the actual flight and journey of getting there, to what I’m doing while there, my journey home, and finally share my experience of me going there when I enter back into the U.S. As I stated above, I was born there. I came to the states as a baby and have never been back. Most of my life I’ve always said I wanted to go back and visit where I was born. Get an idea of my roots. See where I come from. Finally after many years I finally get to have that experience. I will get to see my dad whom I haven’t seen in 12 years. I’m not sure what I’m more excited about. Seeing my dad and getting to bond with him, or going to my home. I’m pretty much set for the trip. I’ve got all the clothes I need. Women there have to cover themselves. Wear long sleeves and pants. So in that regard I’m set. Luggage is bought. Now I have to just get little things like my personal items and such. For now I will close this. But stay tuned for more updates!!! ?

Staff@SPSNFoundation

Welcome to Special People Special Needs Foundation. We are honored to have you as one of our Faces of the Foundation.

Reply

Leave a New Comment