An important meeting helps me still believe in the impossible

This month, I had the rare opportunity to meet Dr. Brenda Wong, a native Singaporean and a professor of pediatrics and neurology at the University of Massachusetts Chan Medical School, where she was the founding director of its Duchenne Program.

My parents had heard Dr. Wong’s name since the 1990s, when my brother, Isaac, and I were born and diagnosed with Duchenne muscular dystrophy (DMD) at birth and 3 months old, respectively. We never got the chance to be acquainted with her when she was still in Singapore, where I live, as she migrated first to Scotland and then to the United States for medical fellowships shortly before the turn of the millennium.

She was born and raised in a Chinese Singaporean family and graduated from the National University of Singapore’s Yong Loo Lin School of Medicine, the only medical school in Singapore at that time, the mid-1980s.

After completing her general pediatric neurology training at Cincinnati Children’s Hospital Medical Center, Dr. Wong continued to sub-specialize there in pediatric neuromuscular medicine. That led to her focus on caring for patients with Duchenne and Becker muscular dystrophy at the Chan Medical School in 2018.

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After hearing about Dr. Wong’s fantastic work with Duchenne families in the U.S. and that she hailed from Singapore, my heart skipped a beat and sank. How could the country I love and call home let her rare genius slip through our grasp? If she’d been allowed the means and resources to work here back when my brother and I were little and required early intervention, Isaac might still be alive.

Since the 1980s, Singapore has been famous for what most Singaporeans term the “brain drain” to describe how our nation often loses its most talented individuals to other countries. That hits me close to home; for people with Duchenne in Singapore, our failure to hold on to the DMD expert best equipped to save us speaks volumes.

Although I learned of Dr. Wong’s email address, I chose not to write her out of principle and respect for my neurologist in Singapore, who’s done her utmost to ensure the best care for me and Isaac. On top of that, I’ve been conditioned not to bother any doctor unnecessarily.

Months passed, and I’d completely forgotten about the email address. In the meantime, my close friend and SMA News Today columnist Sherry Toh invited me to apply in June for a job opening with Muscular Dystrophy News, which was looking for a freelance columnist with Duchenne who could write twice a month.

As I didn’t have a job then, I decided to give it a shot, and much to my surprise, I was accepted! I waited to publish my debut column in August because of my severe dengue fever in July.

Less than three months later, I’d already published my fifth column when, on Nov. 1, I checked my inbox as usual in the morning and had received an email from none other than Dr. Wong! I was ecstatic. Not only did I finally connect with her, but she also complimented my writing!

Fast forward through several conversations and five months, I finally had the chance to meet her when she was here visiting family members at the start of April. It’s hard to believe that I’ve been given the chance to see this expert on Duchenne in person. It gives me hope and makes me continue to believe in the impossible.

Note: Muscular Dystrophy News 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.