A tribute to all who’ve stood by me in life with Duchenne MD
My greatest achievement was only possible thanks to my support network
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On Dec. 10, I performed “Stand by Me” by Ben E. King at the year-end music recital hosted by ART:DIS, a Singapore organization that supports the artistic development of members of the disability community.
I dedicated the song to my pillars of support in my life with Duchenne muscular dystrophy (DMD): my dad, Joshua, who rescued me when my life teetered on the brink due to dengue and pneumonia, and who’s been a faithful provider through his work as a doctor; my mum, Grace, who gave up a promising career as a communications lecturer to guide me through the grueling world of Singapore’s education system and nurtured my passion for the arts and writing; my older sister, Jane, who’s always been my role model; and my late brother, Isaac, who inspires me to be a disability advocate even though he’s no longer around.
Without the care and support of my family members, I wouldn’t be the person I am today, standing tall and proud of what my disability has given me. I’ve been blessed to be born into a family that’s offered me unconditional love and acted as my champions.
A community of support
The day after my vocal performance with ART:DIS, I was invited to the Istana, the official residence of the president of Singapore, where I was awarded a prestigious Goh Chok Tong Enable award in the promise category. This was in recognition of my ability and potential to contribute and give back to disability causes and issues and to empower the lives of disabled persons. My proudest achievement to date wouldn’t have been possible without the unwavering support of those who’ve journeyed alongside me.
Earlier this year, I wrote about how my Filipina caregiver of 17 years, Glenda, has been a vital influence in my life. Having her take care of my daily needs enabled me not just to survive but to thrive in a world where disabled people are a minority. She was my silent ally through my many years of internal strife and turmoil as I came to terms with my circumstances and reality as a rare disease survivor.
Many others like her have joined my circle of support more recently, including my K9Assistance family. My supervisor Cassandra’s decade of work in assistance dog advocacy reminds me every day why I do what I do and remain committed to promoting the rights and welfare of disabled people.
Also, friends like autism advocate Dawn and my former college lecturer Priscilla were a source of emotional support at a time when I had yet to discover myself and find my feet as I neared the end of my education journey.
The Muscular Dystrophy Association (Singapore) has been my primary source of community support since I was a child. They continue to offer members a safe space for forging new friendships with those living with similar conditions and provide services that help make us feel more included. Founding director Sherena Loh has been a shining light to her fellow muscular dystrophy patients.
Last month, I was part of a member choir that sang Celine Dion’s “Because You Loved Me” at their annual fundraising gala. This year was dedicated to our selfless caregivers. It’s those deep connections and friendships with fellow Duchenne survivors that have made me proud to have DMD; without it, the community wouldn’t have touched my life.
Likewise, my fellow rare disease survivor Sherry connected me with the inclusive community here at Bionews, the publisher of Muscular Dystrophy News Today, who welcomed me with open arms and valued my contributions as a columnist. I also had the privilege of meeting Dr. Brenda Wong, a native Singaporean and a professor of pediatrics and neurology at the University of Massachusetts Chan Medical School, after she wrote to me and commended my work in previous columns.
And this year, there’s been one more addition to my support network, the most important of them all: my girlfriend, partner, soulmate, and so much more, Amanda. I’ve been having the time of my life with her while still facing the harsh realities of DMD and challenging moments like the loss of my grandfather. With her by my side, life feels a lot more bearable than it did in the aftermath of Isaac’s demise. Having a disability as well, she’s given me a fresh impetus to fight for what I believe is right for those living with physical impairments and mental illness.
It’s been an exhilarating ride and remarkable journey of triumph and tragedy with Duchenne. It’s impossible to name every individual who has stood by me through thick and thin and journeyed with me through different life phases. But as we approach the end of 2023, I want to take this opportunity to pay tribute to all of them. Thank you for your love and support. This one’s for you.
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 or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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