The DMD community reminds me of my purpose in life
A columnist pays tribute to the Muscular Dystrophy Association (Singapore)
On Sept. 2, the Muscular Dystrophy Association (Singapore) (MDAS) held its annual Go the Dystance carnival at One Punggol, a community hub that houses the Punggol Regional Library. The event is typically held between SMA Awareness Month in August and World Duchenne Awareness Day on Sept. 7.
Although I wasn’t a part of this year’s event, as I’ve decided to take time off my ambassadorial duties with the association, I was very much present in thought and spirit. As a long-term member of MDAS and a patient-survivor of Duchenne muscular dystrophy (DMD), witnessing our community’s growth in Singapore is both rewarding and poignant.
Growing up with MDAS
When I was a child, MDAS was still a recently formed charity. In many ways, we have grown up together. The first MDAS experience I can recall was being a wide-eyed 6-year-old asked on stage to recite a poem I had written with my mother, called “Reaching Out.” My mother had encouraged me to recite it at the MDAS Inaugural Charity Dinner that night.
The poem described my experience with coming to terms with my newfound identity as a disabled person and my desire for friendship while using a wheelchair. A few months earlier, my parents brought me to a disability equipment store to purchase a pediatric wheelchair for my mobility needs just weeks before I started elementary school. I innocently wondered why I needed to use it.
Three months later, I interacted for the first time with people who were like me. My parents brought my late brother, Isaac, who passed away in 2019, and me to MDAS’ inaugural summer camp in Malaysia. I enjoyed getting to know others from the Duchenne community in Singapore, and the friendly volunteers assisting us, some of whom became close friends. That was a memorable experience I’ll never forget.
The pinnacle of our time with MDAS came five years later, in 2007, when Isaac and I each had a collection of our artwork published in books, titled “Not A Wasteland” and “Live Your Dreams,” respectively. Together, we raised about $120,000 to fund the maintenance and upkeep of MDAS’ wheelchair transport service.
That same year, Singapore’s government introduced the Enabling Masterplan, a policy road map that focused on disability issues. Now in its fourth iteration, the latest master plan aims to bring disability policymaking to the next level by making Singapore an inclusive society by 2030.
The fight for equality continues
Isaac and I faced many challenges together, including the harsh progression of Duchenne. The loss of Isaac triggered my return to the DMD community and an intense period of self-reflection. I’ve realized that there’s no shame in being different from others, and embracing who I am is essential to living life to the fullest.
My journey with Duchenne has been a roller coaster of highs and lows, hopes and disappointments. Still, being part of the Duchenne community keeps me grounded and gives me a renewed purpose. As I continue to honor Isaac’s life, I’m reminded of how far we’ve come and how much more there is to do. We must be aware of our progress as a community while advocating for a better future.
Note: Muscular Dystrophy News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Muscular Dystrophy News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to muscular dystrophy.