Reflecting on another year of living with DMD
2025 helped me better understand what it means to be alive with Duchenne
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 took center stage at various points. For those of you new to this column, DMD is a lifelong condition that causes progressive muscle loss and affects breathing and the heart.
2025 began with a reflection sparked by a documentary about a young man with Duchenne who left a mark far beyond anyone’s expectations. That moment framed much of what followed.
Many readers may be more familiar with DMD in childhood than adulthood. Writing this column has been my way of showing what life with Duchenne looks like over time, with honesty and clarity.
Loss, limits, and learning to pause
March marked a complex shift when my longtime caregiver, Glenda, returned to the Philippines after nearly two decades with my family. Here in Singapore, migrant caregivers play a central role in disability care, and their departure reshaped every part of my daily routine. It also highlighted how life with Duchenne is built on trust, continuity, and care relationships.
By July, burnout had caught up with me. My body could no longer sustain the pace of rehearsals, and I withdrew from performing in my debut play in August. Stepping back was painful, yet truthful. Duchenne does not allow prolonged overexertion. Listening to my body isn’t about choice; it is, quite literally, how I stay alive!
In November, an unsuccessful trial of empagliflozin for my Duchenne-related heart condition led to severe hyponatremia, a dangerous drop in sodium levels. Recovery has been slow, and as I write this in December, I am still regaining strength. Health scares like this remain part of adult life with Duchenne, even with careful medical oversight.
Recognition, love, and reasons to keep writing
There were highs, too. In February, I received the Study UK Social Action Alumni Award from the British high commissioner to Singapore. In July, my girlfriend, Amanda, and I organized the first accessible arts workshop at Rebirth Ensemble, the art studio that we co-founded, which centered on touch, story, and collaboration. In October, I turned 30 on the day of the Purple Parade, the annual disability inclusion event in Singapore, where members of the public don purple in solidarity with and support for disabled lives.
Through it all, my relationship with Amanda has continued to blossom amid personal setbacks. It helps to have someone walk with me on my journey with Duchenne.
My hopes for 2026 are simple: better health; developing Rebirth Ensemble into an artist-led accessible arts studio as its managing director; and distinguishing myself at Shalom Medcare, a fully end-to-end medical escort and transportation provider in Singapore, as its freshly minted brand executive.
As 2025 draws to a close, I find myself with a more profound understanding of what it means to be with Duchenne. Not every chapter has been smooth-sailing, and not every day has felt hopeful, yet I’m still here, still writing, still living life on my terms. My journey with Duchenne has always been, and continues to be, about showing up for myself, my late brother, Isaac, and our DMD family in Singapore.
As I step into 2026, I carry with me the harsh realities of 2025. But I’m also learning how to better articulate my access and well-being needs, balance life’s priorities, care for my health, and press on in my quest to tell the truth about my life with DMD.
Join me and Duchenne, my lifelong partner in crime, for another year of promise and adventure in 2026.
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.
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