My name is Leah, and I was born with a rare Neurological Congenital condition called Moebius Syndrome, each individual diagnosed with Moebius Syndrome is affected differently, but in my case, I have a facial paralysis. I’m unable to make any facial expressions. I also have no bilateral eye moments, no natural blink and no mouth closure. I have a speech impediment accompanied with being partially deaf in both ears leading to the need for hearing aids. I am also partially sighted and have balance problems. 

I was diagnosed with Moebius Syndrome at the age of 5 weeks by Great Ormond Street Hospital. I spent my whole childhood up until the age of 16 travelling to and from Gosh where I had multiple tests and treatments and at the age of 8, I had an operation to improve my hearing. 

From a very young age I have been aware that I have a visible difference. I knew from when I started Primary School that I was different due to how some of my peers treated me. I also needed specialised equipment to help me with my education. 

My parents fought incredibly hard for me to be accepted to a mainstream Primary School due the issues related to my syndrome. I am incredibly grateful that they did as being taught in a mainstream school gave me a far better chance to succeed both academically and socially. 

I have always had a yearning to achieve my best, this mentality has helped me greatly throughout my life, helping me to accomplish many things and overcome many obstacles. I have always tried to stay positive and not let my condition be all encompassing of who I am, but this has not always been easy. 

I had a lovely experience at my Primary School and had a nice group of friends but my Secondary School was completely different. I unfortunately was bullied relentlessly and was called horrendous names on a daily basis. 

One such experience that stands out in my mind was when I was walking home with a friend after School. Two boys from my year group approached us and asked why I looked the way I did. My friend and I discouraged the conversation as the boys were becoming verbally incredibly nasty. When I thought things couldn’t get any worse, they then decided to continually throw stones at me. There are many similar incidents like this that effected my confidence and self-esteem greatly. I constantly felt under attack for something I could not change.   

From the age of 8 years old, when I was out in public or around people I did not know, I covered my mouth up with my hand so as to hide the fact I could not close it. I felt as though covering my mouth would hide that I looked different, but it actually made me stand out far more. 

It wasn’t until the age of 28 that I had the confidence to face my fears and to stop covering my mouth. I felt an overwhelming sense of freedom when in public as I could now communicate with people far more easily and I was able to smile at people with my own unique smile, whenever they smiled at me. I feel that this improved my life greatly and helped me accept my visible difference along with Psychotherapy and Counselling.

I have always had a great interest in the Media, from studying GCSE Media to achieving a BA Hons in Film and Media which I am incredibly proud of. My original prognosis from birth was that I would likely be profoundly deaf, unable to communicate through speech, I would be wheelchair bound, I would have serious learning difficulties and that I would be very unlikely to live past the age of three. I am now a 37-year-old Woman, so I think I may have surpassed the Dr’s expectations! 

I hope to start working for a Disabled Charity in the near future, I feel that with my own experiences of living with a visible difference and all the challenges this brings and also my many health problems that I have great empathy for Disabled people. I am very passionate about Disability rights and feel incredibly strongly that any person with a Disability (myself included) should be treated with respect and dignity at all times and not to be patronised for things that are beyond our control. We are the same as any other human beings with the same thoughts, feelings and aspirations

I have an extensive taste in music and Film and often go to live gigs and Film screenings. I have also loved reading from a very young age and my flat is slowly being taken over by books. I love reading any form of writing and being transported to another time and place, whether reading a work of both fiction or nonfiction. 

My one piece of advice for younger people living with a visible difference when it comes to being stared at, is that as horrible and as uncomfortable as this makes us feel, I have come to realise that it is human nature to gaze at somebody that may not be the perceived ‘norm’ (whatever normal is). I am not at all excusing this behaviour, but instead of allowing it to upset me, I have accepted I may get the odd stare. For my own piece of mind, I have taught myself to ignore these and realised that when others purposely mock and make fun of me, they may have hidden issues themselves which is possibly why they may act in a derogatory and immature way.   I have also realised that just because a person may be looking in my direction it may not have anything to do with my visible difference (I wear incredibly colourful clothes that also attract attention). I have also encountered people that have been surprised by my positive personality and the things I have achieved in life, despite everything that has been stacked against me. 

Living with a visible difference can be incredibly hard and challenging at times, it is something that can play on our minds constantly and cause a great level of anxiety and distress.  I would like to emphasise to anyone reading this who is living with a visible difference and has been through similar experiences to mine, who has then gone on to achieve success in any chosen area. Be incredibly proud of yourself! Against all the odds (there are many when living with a visible difference) you have achieved whatever it is you have wanted to and are a much stronger person due to everything you have overcome.