The story of Safura Jaapar
It started when I was 18 months old, the first symptoms of Spinal muscular atrophy appeared: I could stand for a while but be unable to walk. The doctor predicted that I would live for less than 20 years (I’m 39, God Blessed) and during that time the only treatment for SMA was physiotherapy and hydrotherapy to keep my body muscles flexible and minimise the rate of muscle contraction and degradation. I began using a wheelchair full-time, and 2 years later, I developed scoliosis and needed spinal implant surgery. Even though SMA limited my mobility, I stayed active in school and was able to continue my studies at university, where I am now pursuing a PhD in Bioinformatics with a focus on genetics and SMA. I hope at one sweet day, I will be a prolific scientist. I am the founder and former first president of the SMA Malaysia association, an NGO that supports and represents the voice of the SMA community in Malaysia. Chess is really fascinating me. I am also a Paralympic athlete for Negeri Sembilan and Malaysia in chess. I represented Malaysia at the 2017 Asean Para Games. I am an SMA Fighter, a future scientist, an activist and a national athlete. I choose to be the best version of myself. We are extraordinary. Happy World Rare Diseases Day!