How my late brother and I left a mark on our DMD community

While observing World Duchenne Awareness Day over the weekend, I reflected on the journey my family and I have taken, which has been shaped by Duchenne muscular dystrophy (DMD). This year the Muscular Dystrophy Association (Singapore), or MDAS, celebrated the day during its annual Go the Dystance carnival.

Growing up with DMD, I found that getting around was  anything but simple. When I was 8, I started using a motorized wheelchair. At that time, my parents made a life-changing decision: They invested in a wheelchair-accessible vehicle (WAV) to accommodate my brother, Isaac, and me.

Isaac, who also had DMD, was already using a motorized wheelchair. The WAV became our lifeline, allowing us to embark on countless adventures without transferring out of our chairs. This task would’ve grown increasingly complex and dangerous otherwise as our muscles progressively weakened.

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For someone living with a debilitating mobility impairment in Singapore, a WAV provides more than just transportation; it offers dignity and freedom. Having access to the vehicle allowed us children to be seen and heard by others.

Unfortunately, this experience isn’t universal. In Singapore, where wheelchair accessibility in vehicles isn’t considered a basic right, most disabled individuals — especially those with muscular dystrophy — don’t have the means to own a WAV. This fact stands in stark contrast to some Western countries, where access to WAVs is seen as a fundamental need, supported by laws and subsidies.

Our family’s WAV was a gateway to the world. It enabled Isaac and me to showcase our art publicly, participate in community activities, and engage with others beyond the confines of our home.

I remember vividly our involvement with MDAS during our childhood. We were active members; I performed an outreach poem my mother and I had written together at its inaugural gala, while Isaac and I attended MDAS’s first summer camp. Both events happened in 2002, when I was just 6 years old. Our mother, my pillar of strength, also chaired a parent support group, lending her voice and expertise to help other families navigating life with Duchenne.

My family’s contributions

As I grew older, however, I noticed that not everyone had the same opportunities we did. Many of the clients and families at MDAS didn’t have the same access to the outside world.

In Singapore, owning a family car is particularly expensive because of the Vehicle Quota System, implemented in 1990. This system restricts the number of vehicles on the road, driving up car costs significantly. On top of the car’s price, owners must bid for a Certificate of Entitlement, which often costs more than the vehicle itself. WAVs, being more costly than average family cars, are simply unaffordable for most households with children who have muscular dystrophy.

I remember asking my mother if there was a way we could help. In 2006, the governing agency in charge of land transport in Singapore offered to donate a WAV to MDAS to start a transport service for its clients. That would enable them to travel to medical, school, and social appointments with peace of mind.

However, MDAS initially declined the offer because the costs of maintaining such a service were high. Being a small charity with limited resources, its leaders calculated they’d need at least $100,000 to sustain the WAV service in the first three years — an insurmountable amount without significant public donation.

My father, who was on the MDAS board as treasurer at the time, informed my mother of the situation. Since Isaac and I had made a name for ourselves as child artists, my mother had a brilliant idea: She proposed publishing our artwork in coffee table books and organizing a private family fundraiser. The goal was to raise enough money to kick-start the WAV service.

With the generous support of her college classmate, who sponsored the publishing and event expenses, we managed to raise the $100,000 needed on the day of the launch. This remarkable feat caught the attention of individuals and corporations, leading to more donations. Today, the WAV service continues to run, providing crucial support to many families.

While only the founders and early members of MDAS, along with a select few outside the charity, remember our family’s efforts, and though Isaac has since left this world, I look back on that time with fond nostalgia. The memory of what we accomplished together inspires me daily, reminding me why I’m still here advocating for the muscular dystrophy community, raising awareness, and fostering acceptance of Duchenne survivors in Singapore.

While I may not fully get over my brother’s demise from DMD, I also find comfort and solace in knowing that we’ve left an indelible mark on the lives of other Duchenne Singaporeans, just like us.

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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.