I would like to address to you, great-hearted people, who are either parents or children and let you know about some aspects regarding the disease that is tormenting me.
My name is Bogdan-Andrei Puşcaş, I am nine and a half years old and I have been given a ruthless diagnosis: MECP2 duplication syndrome, a rare genetic disease which refers to a psychic and language disability, a muscular hypotonia, facial dysmorphism and muscular spasm; this diagnosis was given to me in March 2015 by the “Victor Babeș” Genetic Institute in Bucharest. This affection would not let me enjoy the childhood, I cannot run together with my brother or other kids, I cannot communicate with the others around me, I cannot make myself understood and I have moments in which I suffer terribly. I am joyful, I enjoy listening to tales, and I give strength to those around me so they can fight this disease together with me; I found the power to smile despite four general anesthesia: two for surgeries and the other two for brain NMR.
There are moments in which ideas that seemed unreal for others, could become reality in a spectacular way. There is God! He has sent me the angel of hope, who could cure my disease. Her name is Huda Zoghbi, who works together with his team from Baylor College of Medicine in Texas, USA; this team has done some research and discovered that the MECP2 duplication syndromes 100% reversible. Therefore, I kindly ask you to contribute with as much as you can so that me and the other children suffering from this disease could have a chance to happiness and could live our life without having to feel sorry for any taken step or any given smile. The support of each of you will surely come gradually. I now thank you through my loved ones, but soon I will be able to do it personally for your kind gesture.