My name is Loriana Firth, I am 16 years old I’ll be 17 in 2 more months. I live in North London in a place called Enfield. I may be just like you…but I’m not. On January 20th 1993 I was born with the rare condition of Moebius Syndrome. I was missing important nerves and muscles in my face that work so that people can show facial expression, something I’ll never be able to do. People take a frown, or a raised eyebrow or simply just a smile for granted. Anyway when I was born I weighed 7 pounds and 9 oz as soon as the doctors realised several things were wrong I was placed in the special care baby unit. I couldn’t turn my eyes from side to side and I could not suck from a bottle either. Both my parents were heartbroken and upset because they didn’t know anything about the syndrome and whether I would live or die. The only way I could get any food or water through my body was from a tube that was placed through my nose and all the way down into my stomach. I was also suffering from heart flutters which meant that my heart rate would drop really low then rise back up again this was because I had suffered a traumatic birth. The doctors diagnosed me with Moebius when I was 2 weeks old. 6 weeks later I was still being tube fed and I was underweight. When I came out of tube feeding my mum started feeding me with a bottle and what she used to do was squeeze the bottle so it was easier for me to drink. I used to hold onto her hand while she did this and after about a week I started squeezing the bottle myself. Both my parents joked that I was a clever baby. I was also suffering from clubbed feet which meant my feet were turned outwards. Up until I was about 6 I travelled to and from Newcastle to have surgery on my feet to correct them. If I didn’t have the surgery I would have been in a wheelchair for the rest of my life which is not what my parents wanted for me. I remember coming home to London both my feet in plaster they were quite sore, but nothing I couldn’t handle. I remember my cousin used to come over and draw stuff on my plaster casts. Usually I would make her draw Ariel The Little Mermaid as I was obsessed with her when I was younger. My feet corrected themselves and I was able to walk like anybody else within a few months. Throughout my childhood I attended speech therapy classes, eye check-ups. I used to go up to Manchester to have body brushing treatment. My parents knew that even though I had challenges in my life that I would be able to overcome then and I was quite an independent child. They taught me that what I had was in the mildest form possible other children like me were born with missing body parts, facial disfigurements some even died. So I was one of the lucky ones.
Sometimes I found it and still today find it hard to see the bright side. Primary school was tough for me you always get that one kid who feels the need to point you out of the crowd and make a joke about you like you’re not there. That hurt me a lot it wasn’t until my Mum taught me to stand up for myself which was when I got the last laugh, not them. They probably thought because I couldn’t smile or show facial expression I was a complete retard but the day I had enough and stood up to them and was willing to put up a fight was the day they shut up. I could read, I could add up, I could talk, I could walk basically I was just like everybody else. I’ve always been quite a quiet and shy person so I didn’t really have a lot of friends just mainly 2 or 3 good friends which was enough for me. Going into high school was probably the worst time for me. I was bullied for about four years by this boy. He would not stop harassing me, from the hurtful comments, to the laughing it just would not stop. This kind of became a part of my everyday life for four years in the end I just got used to it, it became part of an everyday routine. The bullying soon took its toll on me. I started isolating myself from everybody my whole personality just closed up I felt like I was in total darkness. The same questions kept popping into my head why did God do this to me?, why me I don’t deserve this. I thought it was my fault. By this time I was 14 and I wanted to end my life I did not see the point in living. No matter how many times my family or some of my friends would tell me how pretty I was I did not want to look into the mirror. All I wanted was to be like everybody else and knowing that would be something I’ll never be drove me to the unthinkable. I don’t really like talking about what I tried to do to myself because I find it upsetting and I don’t want anybody reading this to be upset or to think they should maybe try what I did because honestly I wasn’t in the right state of mind and its not worth it. By this point I had already skipped classes to avoid confrontations with the boy so my parents found out about me skipping classes and that is when the whole truth came out. Immediately they went to the school and the boy was to stay away from me at all times if he didn’t then he would be suspended from school. I attended counselling to try and get my confidence back and after that everything just fell into place. I made new and better friends and I could spend my last year in high school happy.
Throughout my high school life I turned to the internet chat rooms to make friends so I wasn’t completely lonely. I met loads of boys on there and I put pictures of myself on the sites and I was getting a lot of attention. Even though I knew only too well that half these guys were hungry for one thing only but still it gave me confidence in myself that I was pretty. I met one special guy who changed my life forever, he was my first love. I was his best friend and he was mine. We talked for about 5 years so that is basically all of high school. He was everything to me I would confined in him when I was having a bad day and he would do the same. We would stay up until early hours in the morning just talking about everything. We eventually fell in love and we started talking on the phone and saying "I love you". To know that I had him in my life was an amazing feeling. The problem was he lived in Northern Ireland and I lived in London the distance did eventually get too much for us. I got myself upset because I knew I could never see him and eventually I lost all contact with him. I deleted his MSN, I deleted his number, I deleted his pictures, I deleted all the songs he sent me. It was the hardest time for me and to this day I’ve never told anyone about him. He taught me something and that was that it didn’t matter that I had Moebius because to him I was a beautiful everyday girl with an adorable accent (his words exactly). So now when I look in the mirror I have faith that I can be anything I want to be and he installed that in me. He’ll always hold a place inside of me, nobody can compare to your first true love but now I have faith that in time I’ll find a good guy like him and that will love me for who I am not what I am.
I am 16 now and I believe everything that you go through in your life whether it be love, heartbreak, loss or bullying it all happens for a reason. Every little piece in the jigsaw fits together and makes you a stronger person, a better person. I realise that god did put me here on this earth for a reason I still don’t know what that is yet but I’m working on it!. There are so many things I want to accomplish in my life I want to become a make-up artist, a writer, I want to travel the whole world. Today I was flicking through the music channels and "Hero" by Mariah Carey was playing. I turned another music channel on and another music legend was playing Michael Jackson. I looked outside my garden window as the morning sun glowed on the fallen gold leaves and I thought I want to inspire people, I want people to look up to me…I want to change the world just like Mariah Carey and Michael Jackson…and I intend on doing that. People may think I won’t be able to do it but it proves there is so much more than what meets the eye. Because now every living second is worth fighting for. I started from the bottom and I’m working my way up to the top so it can only go up from here.
What Moebius Syndrome Awareness Day Means To Me!
The media have made a number of illnesses well known to the public such as cancer, mental health illnesses like Bipolar Disorder and Schizophrenia and that is just to name a few. Though in most cases Moebius Syndrome isn't life threatening it is still a syndrome that affects people all around the world emotionally and physically.
Every day people usually have no clue what Moebius Syndrome is, so sufferers with severe facial paralysis sometimes will get looked at strangely while innocently walking down the street, going about their day. Often teenagers in high school will get bullied because having Moebius Syndrome makes them look different from others. This can have a serious affect on people, making them feel even more anxious about their appearance. It is hard enough having to wake up everyday knowing there is no cure to this syndrome;they don’t need someone constantly reminding them of that.
Sometimes moments of sadness just hit people when they remember they will never be able to smile, they will never be able to show facial expressions such as happiness or sadness. It is hard when others don’t understand the syndrome; they might assume a sufferer is moody or unfriendly by the appearance of their face when this is not the case. Most of the time it is really hard to let people in because it can be awkward breaking the ice, not knowing quite how to explain yourself to other people so that they can get a better understanding of the syndrome. And when you do explain yourself to someone you have to explain yourself to someone else and this can be tiring.
Having a Moebius Syndrome Awareness day will benefit the public so much, its not a common syndrome so putting it out there to the world will just make people with the syndromes life a little easier. That way the world is educated and familiar with it and hopefully they will be able to recognise someone with Moebius Syndrome. Hopefully they will be able to realise that people with Moebius Syndrome and perfectly intelligent and intellectual, and that they lead normal lives. Thiswill also benefit Doctors who will be able to diagnose new born babies and infants quicker.
Having an awareness day will also be great for people with the syndrome who are unaware that there is a Moebius Syndrome website and group on Facebook that they can go to if they need some support. This can be a very positive experience as they can interact and meet up with others with the syndrome; this can help people feel less isolated. Finally the more people that know about the syndrome the better it will be to find what causes Moebius Syndrome as this has been yet to be discovered.
-Loriana Sofia Firth-
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