Duchenne: Shalom's Lifelong Partner-in-Crime — Shalom Lim Ern Rong

Turning 30 last month was a significant milestone in my Duchenne muscular dystrophy (DMD) journey. For years, my care has revolved around keeping my vital functions strong enough to sustain a body whose muscles continue to wither with every passing second. Having lived with DMD since birth, I’ve witnessed…

This Saturday, I turn 30. My birthday lands on the same day that many of us in Singapore, where I live, will wear purple for our annual disability inclusion event, the Purple Parade. In the past three decades, I’ve marked many milestones with Duchenne muscular dystrophy (DMD), a genetic…

A couple weeks ago, I co-emceed the Zero Project Asia Pacific Symposium 2025 with my girlfriend, Amanda. The event, a collaboration between SG Enable and the Zero Project, took place at Enabling Village, a community space here in Singapore designed for accessibility. The symposium gathered leaders in Asia to share ideas…

Living with Duchenne muscular dystrophy means every trip to the hospital is key to my survival. From heart scans to routine medical appointments, leaving home is never simple. I rely on my mom to ferry me to every checkup in our family’s wheelchair-accessible vehicle. Earlier this year, when…

On Aug. 21, I wrote to my local newspaper here in Singapore about a gap in housing policy that affects younger adults with severe disabilities. I’m one of those younger adults: I’m 29 and have Duchenne muscular dystrophy, a progressive condition that leaves me fully dependent on caregivers…

When I was 13 and fresh from spinal fusion surgery, I sat in a West End theater in London with my family, watching “Les Misérables.” The music stirred my soul and, for a fleeting moment, I imagined myself on stage. But that dream quickly faded. Accessibility barriers at school…

As an artist with Duchenne muscular dystrophy (DMD), I’ve long recognized how creativity can foster meaningful connection, perhaps especially when rooted in design that’s accessible and inclusive. My partner, Amanda, and I recently spoke at GovTech’s Inclusive Design Week 2025 here in Singapore as part of the closing panel…

Last Sunday, my girlfriend, Amanda, and I co-led an art workshop that brought us both joy. The accessible art journaling session, “Why your story matters: Where art meets wellness,” was held at the Bishan Public Library in the northern part of Singapore and was part of the National Library Board’s…

A couple weeks ago, I had the privilege of participating in a unique event designed for higher education students here in Singapore. It’s offered by Youth Corps Singapore to foster a sense of service among the next generation of leaders. As one of three ambassadors representing the Muscular Dystrophy…

Living with Duchenne muscular dystrophy (DMD) has taught me countless lessons, especially the power of connection, creativity, and celebrating every form of love. Last Saturday, I attended the 11th annual concert of The Purple Symphony with my girlfriend, Amanda, and my new caregiver, Julie. Titled “Perhaps, It’s Love,”…

Last Thursday, I participated in a workshop that used experiential theater to examine healthcare conversations. With a sense of anticipation and hope, I stepped into the unknown, eager to gain insights that could enrich my advocacy for Duchenne muscular dystrophy (DMD), which I have. The workshop, held by the…

As a Duchenne muscular dystrophy survivor, I’ve spent much of my life on the outside looking in, especially when it comes to public events like concerts and sporting events. My condition affects not only my ability to move but also my breathing. I rely on a BiPAP…