Finding meaning at 30 through my disease communities
Supporting others on their health journeys brings me purpose
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 lived experience as a Duchenne muscular dystrophy (DMD) survivor and the work we do for older adults, patients, caregivers, and families. Besides DMD, I have chronic kidney disease, so supporting others on their healthcare journeys feels deeply personal.
On the evening of Oct. 25, which was also my 30th birthday, I attended the National Kidney Foundation (NKF) Charity Dinner with my colleagues, whom I usually only meet online. NKF is a Singaporean nonprofit that provides dialysis services, preventive healthcare programs, and community support for people with kidney failure. The gala was held at the Pan Pacific Singapore hotel and brought together more than 600 guests who helped raise over $1 million for patients requiring long-term dialysis care. For my American readers, this dinner is a significant event in Singapore’s charity scene, aiming to provide affordable treatment for thousands of families.
How community care mirrors life with Duchenne
Sitting in the ballroom that night, I found myself reflecting on how care looks different yet familiar across various conditions. Kidney disease and Duchenne affect the body in distinct ways, but both demand ongoing medical support, emotional resilience, and a reliable system of caregiving. Listening to stories told by NKF patients reminded me of my own circle of support. My caregivers, my parents, my girlfriend, Amanda, and the many healthcare professionals who help manage my weakening heart and lungs have all been lifelines throughout my DMD journey.
I thought about my late brother, Isaac, who also had Duchenne and passed away at 28 from heart failure. Reaching 30 is something I’ll never take for granted. Being surrounded by people raising funds for healthcare reminded me of how fragile and precious life with Duchenne can be.
Marking 30 through connection and purpose
Turning 30 at a charity dinner was unexpected, but meaningful. It felt like a reminder that even as my muscles weaken year by year, my ability to contribute continues to grow. This new role at Shalom Medcare allows me to champion safer and more dignified medical transport for patients. My work with Rebirth Ensemble, the art studio that I co-founded with Amanda, lets me spotlight disability-led creativity and innovation. And this column gives me a space to share my voice honestly with readers.
Living with Duchenne means every milestone carries added weight, but it also deepens my appreciation for community and purpose. As I embark on this new decade of my life, I bring with me the strength of the people who support me and the desire to make each day a better one for those with Duchenne and other life-threatening rare diseases in Singapore.
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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