There’s never a dull moment living with Duchenne muscular dystrophy
I'm proud of my range of experiences as I step into new adventures in 2025
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Living with Duchenne muscular dystrophy (DMD) has involved a series of challenges and triumphs, each shaping the person I am today. As 2025 approaches, I’m reflecting on that journey as well as imagining the path ahead — especially since the coming year includes a significant milestone for me.
I’ll turn 30 next year!
That’s more than just a notch on the aging ladder. It’s a testament to my resilience and the unwavering support of those around me.
Overcoming challenges in 2024
The past year has brought a range of up-and-down experiences. The early months were particularly tough, marked by severe withdrawal symptoms and mood swings after tapering off antidepressants and steroids in late 2023. This problematic period led to my premature departure from a job with K9Assistance, a Singaporean charity that promotes the use of assistance dogs for people with disabilities.
My health challenges, meanwhile, culminated in a three-day hospital stay because of a bacterial infection following the removal of an ingrown toenail. All of these difficulties nonetheless strengthened my resolve and resilience.
In fact, the latter half of 2024 brought a wave of positive changes. Participating in the Enabling Lives Festival, an annual event in Singapore celebrating inclusion and abilities, was a significant highlight. The months of rehearsals paid off, culminating in a successful performance that reinforced my passion for the arts.
Joining Shalom Medcare, a Singapore-based medical transport company offering accessible healthcare transportation services, as a marketing communications assistant in September provided me a renewed sense of purpose. Additionally, co-founding Rebirth Ensemble, an art-making business, with my partner, Amanda, has been fulfilling, allowing us to channel our creative energies into something meaningful.
A pivotal factor in navigating these transitions has been the unwavering support of my caregiver, Glenda. Her decision to delay her retirement until March has granted my family and me valuable time to plan, as the handover process will undoubtedly be a significant transition.
Still, with careful preparation, I’m confident we’ll manage it effectively. I’m thankful for the support of Glenda and others who’ve been instrumental in my journey.
New adventures in 2025
The prospect of traveling abroad for the first time in over a decade fills me with excitement. My last such trip was to Western Australia in October 2013. I’ve found it invigorating to explore new horizons. I’ll be doing that in another form as I aspire to write my first play; I’m aiming to debut it as part of a larger showcase reflecting my experiences and perspectives.
Otherwise, building the Rebirth Ensemble with Amanda is a priority for the coming year. Our shared passion for visual art has been a source of joy and a means to overcome the challenges posed by our disabilities. Through this venture, we hope to support artists with disabilities and foster a community that celebrates creativity and resilience, of which we’re grateful to be a part.
As I stand on the brink of 2025, I’m filled with anticipation for these adventures. Living with Duchenne has taught me that life is unpredictable and often challenging, but always worth embracing.
The journey ahead promises to be yet another series of ups and downs, and I’m ready to face them with optimism and determination. Life with Duchenne is never dull, and for that, I’m proud.
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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