The story of NCUMISA
Story of my life.
I am Ncumisa Zimbini Beja 24 year who was born with a rare disease “Muffen`s Syndrome” Many things were different in my body than other kids as I grew up. Firstly I could not see anything that was fare or close. People including my very own parents thought I was not being truthful. Secondly my toes were so different, as my fingers were strangely long and tiny, but i saw a difference when I was to compare my hand from the other persons hand, slightly by curved edges of the bones and my hands were not identical to each other.
I only knew about my genetic disorder in 2012 at the age of 21 years, yes that is true although I was born with it I did not know about it according to me all most my entire life. That make me angry thinking if I knew thing would have been different but technically that is not only 5% possible. I am smart,driven,passionate,dedicated and focused individual who always willing to learn more and get involved to doing good work. My life would have been different if I knew that I was leaving with this disorder because I think I would have used an advantage of being “disabled” of which was going to be feeling sorry for my self. Growing up not knowing has been nothing but an advantage for doing more and compete in everything I do, an advantage to do and archive the unexpected.
Despite the fact of I have been living with Muffen`s Syndrome, I became one of the top students at my primary education, I sang in a school quire and I sang the high notes on a First soprano, I ran the most challenging race “long distance” I never knew that I was overcoming the fact of our heart and lung conditions that are contained by “MS”. At the high school level I was a Netball player,team leader and a representative.
I am full of life in my life I wish to be a good example of people living with rare diseases, role model to normal and “Disabled” or physically challenged people around the world. My dream is to be part of making this world a better place to live in even for those who are living with rare diseases. It is hard to live with a rare disease because people will see there is something wrong with your appearance they will not ask you rather gossip about it, unlike those who are blind or those on wheel chairs. It makes me sick to know even some of the doctors do not know about some of rare diseases. Like mine it took a specialist to identify that I am living with “Muffen`s Syndrome”
……LIFE IS A JOURNEY KEEP WALKING…….
To Be Continued…