Moebius Syndrome: A Motivation
For the past five years I’ve been a part of the winning team at Vodacom, fulfilling my role as a Customer Care Consultant within the Customer Care division. It has been a fantastic five years, not only because I have witnessed first-hand our customers’ attitudes towards rapidly changing technologies, but also because I have been able to realize my passion for helping people. It still fills me with great satisfaction to know that in maybe two or three minutes I have made a small difference in someone’s life, and the acknowledgement of that on the other side of the line is still, to me, the greatest reward of all.
Yes, even if it is about the Samsung which just cannot seem to open the electronic garage door, or “Can I change the channels on my TV with my cellphone?”, to “Does my Nokia 5110 really detect speed traps?” I believe the source of my passion is the belief that all of us are unique in our differences, and that there really is strength in diversity. This is a subject which is very close to my heart, and something I have had experience with.
I was born with a rare condition known as Moebius Syndrome. From what I have researched on the internet, it affects 1 in every million people and it affects race groups and gender equally. What it is, in short, is the absence of the 6th and 7th and various other craniofacial nerves which are responsible for facial expression, chewing etc. That is the main characteristic of the syndrome, but many, like myself, have limb deformities, low muscle tone, and in some severe cases even mental retardation.
I was first diagnosed with Moebius Syndrome only when I was five years old. At the time of my birth doctors were not aware of what was wrong with me, and were unsure what treatment I should be given. My mom was recommended to an eye surgeon, who when after he had performed an operation on me, contacted her to let her know he had found information on what I had in a medical book which he had obtained, ironically, while studying in the United States. On a visit he photocopied the page, and for the next 13 years that page was our single source of reference to Moebius Syndrome.
Often when I’d ask about my disability, my mom would take out the page from a file containing important family info, and I used to always think that the boy in the picture was me, as I’d never seen anybody else quite like myself before.
When I was about three years old my parents, who knew that I needed further stimulation set out to find a school for me. Naturally I couldn’t attend a normal pre-school, so some special schools were approached. But even the special schools had reservations about taking me on, as they only catered for cerebral palsy or learning disabled at the time, all of which their tests of me indicated I didn’t have a problem with. Eventually the school psychologist, seeing my mother’s desperation, consented to give me a month trial period which gradually turned into a full education.