The Fighter

Siti Safura binti Jaapar, age 33
Spinal Muscular Atrophy Type 2
Malaysia

My life goal is to find the cure for SMA. I am inspired by Prof. Dr. James R. Lupski; a scientist diagnosed with Charcot-Marie-Tooth (CMT) disease who did research on it for more than 20 years.

Living with Spinal Muscular Atrophy (SMA) means I will never be like others. SMA is a progressive disorder where one’s physical strength deteriorates over time. It affects the motor nerve cells in the spinal cord, eliminates the ability to walk, eat, or even breathe at the severe stage.

At 8 months old (1983).

I was 2 when my parents noticed that I had difficulty standing on my feet and fell down easily. My steps were so slow, heavy and unstable. My parents suspected something was wrong with me, as I was not like my other brothers, so they brought me to my first pediatrician in Hospital Tuanku Jaafar, Seremban. Because of my physical characteristics, I was initially diagnosed with SMA. My pediatrician suggested doing a muscle biopsy, which would be sent abroad for analysis. This was the year 1985, and there was little information about this neurological disorder due to the lack of modern medical technology in Malaysia. As a young couple who had very little medical knowledge and understanding of the matter and who just got a long awaited baby girl, my parents rejected the suggestion. So the exact disorder was never confirmed. I attended regular physiotherapy and hydrotherapy to slow down the disease progression and it worked quite well. Since 1988, the Physiotherapy Unit in Hospital Tuanku Jaafar, Seremban became my second home.

At age 5 (1988).

Growing up as a kid with SMA was extremely challenging. I felt left behind. It was a strange feeling to see all of my friends running around, while I had take very slow steps with aid from my dad. At first, I distanced myself because of the curious looks from others. I wonder how my parents felt at that time when strangers came up to them to ask unnecessary questions about my illness. I was a shy, timid and lonely girl, although I longed so much to join other kids to play and make friends. However, with the support of my parents, I slowly overcame my low self-esteem issues. My mother was the one who motivated me not to be a quitter in anything. She always reminded me to work hard for my studies, as she believes education will bring me forward in life. She even enrolled me in piano lessons so that I could develop my potential, which I thought I had none due to my illness. With the consistent encouragement, I managed to complete the piano Grade 5 exams with distinction marks from The Royal Music of London.

There was a time when I was moved from the first to the third class as the class teacher felt that I would slow the proactive pace of the bright students due to my disabilities. It was a devastating year to be separated with good friends. In spite of this, I received a very warm welcome from my new classmates and teachers who gave me unconditional support. My grief turned out to be a great gift! I was the runner-up of The School’s Best Student Award that year and did very well in the national exams, Ujian Penilaian Sekolah Rendah (UPSR), which enabled me to further studies at a secondary boarding school.

 

As a Girl Guide’s member in secondary school.

Receiving the award for Best Student in Secondary School (2000).

To study in the well-known boarding school is a privilege to any student. Yet, I had to reject the opportunity, as most of the schools’ infrastructure was not handicap friendly. It was 1996, when I enrolled in Sekolah Menengah Seri Ampangan, Seremban where I met so many kind people and have lots of fond memories. I started using wheelchair as I could not stand longer than 10 seconds. I was so lucky that my mother was also a teacher in that school, making negotiations with the school administration easy. In this school, I was active in curriculum as well as co-curriculum activities and my potential as a school teenager was unleashed. I was a Girls Guide member, represented my school in history and science competitions and chess tournaments at the state level. I also discovered my talent in poetry and won the first prize for a poem writing competition at the state level.

My family during Raya celebrations.

Although my days in secondary school were exciting, SMA weakened my body muscles progressively. I developed scoliosis and it was getting worse day by day. We made a tough decision to do a spinal fuse surgery, as it was a major and risky operation that would take about ten hours. The spinal surgeons, Dr. Ramli Baba and Dr. Mazwar Sofiyan in the General Hospital of Kuala Lumpur convinced my parents and I that the surgery had to be done as soon as possible to prevent my spinal ‘S’ curves from worsening. It took us a whole year to come to a decision. It was during the end of year school holidays 1998 and I was just finished my Penilaian Menengah Rendah (PMR) exams. I still remember the night before the procedure; a trainee doctor came and wanted to draw my blood. He tried 13 times on my arms and failed. At last, the other doctor came and finished the job. I was in pain and became terribly anxious about the operation the next morning. I cried aloud which was unusual of me and that made my parents weep buckets too. It took us a while to calm down, and together we prayed and hoped that everything would go just fine. It was a Friday during the Ramadan month – the operation started at 8.00am and finished successfully at 6.30pm. Two days later, I was moved from the ICU ward to a normal ward and had a smooth recovery. We were so grateful and were overjoyed when we got news from school that I got flying colors for my PMR exams.

 

With my amazing parents during convocation day (BSc. UKM).

Attending a conference with UiTM colleagues.

Since then, my health and posture has improved and I seldom get sick from fever or flu. I managed to slow the progression of SMA by doing light exercises at physiotherapy. Yet, it was not confirmed which type of SMA I had. Hence, I asked my doctor to do a muscle biopsy and she did a minor surgery and took muscles tissues on my left bicep to analyse, and found out that I have SMA Type 2. Due to my improved health post spinal surgery, I got the chance to finish my studies in Bachelor and Master Degrees at local universities. During my studies, I had to face many difficulties especially due to inaccessible infrastructure of campuses, and people who are ignorant and lacked empathy. I also missed a good opportunity to study abroad during my Masters because of my physical and financial limitation, yet I have no regrets. Currently, I am pursuing my studies in PhD of Health Sciences with concentration in Bioinformatics. I have a few years of experience in lecturing at a local university while actively doing research in pharmaceutical sciences, as my life goal is to find the cure for SMA. I am inspired by Prof. Dr. James R. Lupski; a scientist diagnosed with Charcot-Marie-Tooth (CMT) disease who did research on it for more than 20 years.

Conducting a lab session at UiTM.

As a VIP Guest lecturer during the Pre-graduation Dinner (Faculty of Pharmacy, UiTM).

Whenever I take a stroll down memory lane, remembering the good times and bad, I feel blessed to be who I am, to have such amazing parents who been together with me through thick and thin, to be surrounded by supportive family members, teachers and good friends. Although SMA caused me so much trouble in life, yet it is a test that has led me to discover my real potential as a person, a daughter, a friend, a student, a researcher, a community member and ultimately a servant of the Almighty God.

 

 

Contributing Partner

 


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