My brother, Nabeel, is suffering form Duchenne Muscular Dystrophy. I have seen my brother's condition detriorate day by day and I have seen him struggle every single day for life. I have seen him smile the brightest smile despite knowing that there is no hope and no cure for his disease. I have seen him cry alone, at night, when everyone went to sleep. I have seen his grin stretching from ear to ear when I kissed his forehead. I have seen how scared he has been of being left alone. I have seen him storing every depressing thought within himself, just so his family doesn't get worried or upset. I have seen him share things with me, his best friend. I have seen the love in his eyes when he told me that I am the best sister ever. Knowing beforehand that one's fate is death at such a young age, my brother and many others like my brother, are dead from the inside before their actual death.
Nabeel, and many others like him, feel that their life has no meaning, no purpose and that they don't deserve to have ambitions in life. He wonders 'Why me?' all the time. Nabeel is now 22 years old and his health has worsened a lot. He finds it difficult to speak much and even when he does, his voice is quite low. His fingers are stiff and not flexible at all. His eyes are now dirty or red most of the time. His spine has an extreme curve which does not allow him to sit for longer periods of time. Nabeel, himself, searched for any update on the drug which would cure DMD, every single day. He can use the laptop but only the cursor with his thumb stuck in between his four fingers and he can not use the keypad at all - moving cursor and clicking on links is all. If he has to write something or search for something then I am his typist. His legs don't stretch at all, the knees don't allow it. The elbows don't allow the hands to be stretched either. Recently, he has been complaining about not being able to sit even for thirty minutes. Then, his passion for video games is faced by another obstacle. The obstacle is that his hands can not use the Play Station 3 or XBOX ONE controller anymore, the fingers find it hard to press the button and he does not have much strength to press buttons or move analogs. This has been the cause of his depression for the past few months as he believed that there was one thing he was good at or what he could actually do, gaming, and now he is planning on quitting his 'gaming world'.
In a country like Pakistan, special needs children are not much cared for except what their families do for them. They are a social outcast and they hardly go out anywhere. My family, on the other hand, can and will do anything for Nabeel. I love my brother more than anyone or anything and if I ever lose him, I will lose everything, even myself. He has lost all hope to get cured but I still have a little left. I am hoping that doesn't die as well.
We need a cure to make us firmly believe in faith, hope and patience. We need a cure to fight for the power to fight. We need a cure to fight for light and hope. We need the drugs that will cure DMD to be easily accessible in all markets worldwide. We need a cure to save my brother's life. We need a cure to save many lives of DMD patients. We need a cure to fight for life.