Saifullah Khalidi

I’m Saifullah Khalidi, born in Lucknow and raised in Barabanki, Uttar Pradesh. I’m a graduate and now preparing for competitive exams. Being a patient of SMA, it’s very difficult to get even basic tasks done. To get a spoon to reach my mouth feels like carrying tons of mass. The world is so much inaccessible to the differently-abled. But my mom is nothing less than a superwoman. She is also my BFF because of the way she understands me, the way she supports me, no one will ever understand. In short, she is my support system. Whenever I feel low, just her presence by my side gives me all the motivation. I want to achieve something in my life, just for her. On an invitation to a party, the first thing I ask is if there is an elevator. It just goes on and on, you get the idea. When I was younger, I missed so much on many things like swings, etc. SMA is a rare genetic disease, which directly affects the brain stem and neurons of the spinal cord. I don’t have much control over my life, I am very much just on a loop. After high school, when I got into college, I was so worried about making new friends, getting habitual in a new environment, etc. I got mixed reactions on my first day, being in a wheelchair, that was obvious. But, I made good friends. They supported me as I was not any different. I know that if I want to not get treated as “special”, I shouldn’t portray myself as one in the first place. I always explained my disability in a fun way. Once my English teacher asked, “What is this SMA did to your body exactly?” “It made my muscles so weak that I procrastinated on finding out”, the whole class burst into laughter. As of now, I am mature enough to discuss it without any hesitation. There were no treatments until a couple of months ago. There is a ray of hope now in the form of Spinraza and Roche’s Firefish and Sunfish. I need this treatment so that I can at least able to do my basic chores. Spinraza is given to many patients in the USA, and the patients witnessed the growth in them. I am very much hopeful for it. Also, I truly believe in don’t give me the fish to eat, else teach me how to fish.

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