In my previous column, I shared my experience of stepping away from performing in my own play, “The Other Side,” and trusting that the work could continue without me at its center. This column picks up where the last left off: the moment the play met its audience, and…
Duchenne: Shalom's Lifelong Partner-in-Crime - a Column by Shalom Lim Ern Rong
I’ve often written about learning to live alongside uncertainty. Duchenne muscular dystrophy has a way of quietly shaping plans, then loudly interrupting them. Last July, that disruption arrived as burnout during rehearsals for my graduating showcase at BEYOND DIS:PLAY, a performing arts training program in Singapore for disabled…
Jan. 8 marks four years since my family welcomed my animal companion, Pandan, into our home to foster. Since the new year began, I have been reflecting on how such companionship enters our lives quietly and unexpectedly, and without ceremony. Pandan is a rescued street dog, known locally as a…
This column has followed me through a year that has asked a lot of my body and my heart. Looking back at what I’ve penned this year, 2025 reads like a bittersweet journal of my relationship with Duchenne muscular dystrophy (DMD), one where grief, growth, pride, and fatigue all…
Last month, I attended “The Sun Will Shine,” a jukebox musical staged at The Star Performing Arts Centre in Singapore. I was invited by the SingHealth Patient Advocacy Network (SPAN), a collective of patients and caregivers who offer feedback to improve healthcare services. As someone living with Duchenne…
Recently, my role at Shalom Medcare shifted from marketing communications assistant to brand executive. This move aligns my professional work with my long-standing identity as a disability and patient advocate. Shalom Medcare is a Singapore-based medical escort and transport provider, and the new role strengthens the connection between my…
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…
Recent Posts
- I rarely answer honestly when asked, ‘How are the boys doing?’
- Trial testing gene-editing therapy PBGENE-DMD gets FDA green light
- A winter blizzard had me cooped up at home for days
- New Phase 3 trial of Duchenne gene therapy SGT-003 to begin dosing
- The rule of 10 helps me navigate bad days with LGMD