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Rediscovering My Faith After Losing My Brother to Duchenne MD

On Dec. 4, I performed British singer-songwriter Calum Scott’s 2017 pop ballad “You Are the Reason” at a live caroling session with ART:DIS, the first organization in Singapore to pioneer the artistic development of members of the disabled community. The performance was part of the annual Enabling Lives…

I’m Wondering if Advocacy Is Always Worth It

Before three of my sons were diagnosed with Duchenne muscular dystrophy (DMD), I didn’t know what I didn’t know. After that, my learning curve went straight up. I still needed to learn the amount of advocacy work it takes to be a parent to a child (or…

The Reasons Why I Share Our Rare Disease Story

Is it necessary to write about my family and three children with Duchenne muscular dystrophy (DMD)? I have always felt that it is. However, sometimes, especially on social media, I am questioned and criticized when I share certain challenging aspects of life. “Why does she have to share that?”…

How I Define Love With Duchenne Muscular Dystrophy

On Nov. 27, I attended a live performance by ART:DIS musician Sky Shen, an old friend from the Muscular Dystrophy Association (Singapore) (MDAS). The show featured his recent debut EP, “Wheel You Love Me?” — a collection of songs he wrote about his experiences with…