Last Saturday, I lost a dear friend of mine, Timothy Chan, who had Duchenne muscular dystrophy. He passed away in the hospital in the morning, days after he had been admitted with a respiratory illness. The unexpected news from his parents shocked me, as I had caught up with him and a few friends from the Muscular Dystrophy Association (Singapore) (MDAS) just last month.
I haven’t felt this devastated and shaken since my brother, Isaac, died six years ago. Timothy was five years older than me and a year older than Isaac. Since 2022, he had been my closest friend and biggest role model. I will always remember him for his glow, maturity, and wisdom. He impacted and inspired me in ways words cannot do justice.
As someone with the same condition, I know how vulnerable our bodies are. Duchenne is a genetic disorder that causes muscles to weaken over time, affecting how we move and breathe, as well as our heart. By adulthood, most of us need to use ventilators around the clock and require constant care. This reality wasn’t far from my mind as I delivered a eulogy at his memorial service on Sunday.
A friendship shaped by Duchenne and faith
I first met Timothy in 2020, when I was struggling with grief after losing Isaac and anxiety from the COVID-19 pandemic. A family friend, Sherena Loh, who co-founded MDAS, mentioned his name to me when I started a fellowship for adults with muscular dystrophy who share a common faith.
Back then, we were just Facebook friends. I reached out to invite him to join the group, and he agreed without hesitation. We began meeting virtually every two weeks. When COVID-19 restrictions eased, we finally met in person at an MDAS barbecue in 2022, a few weeks after I had recovered from a near-fatal bout with dengue. That evening, our friendship began to take root through barbecue grills and meaningful conversation.
Over the next three years, Timothy became one of my closest friends. That carried weight because of who I had lost before. After Isaac died, there was an emptiness in my life I couldn’t fill. Yet somehow, Timothy stepped in with care, humor, and presence.
I admired his confidence and radiance. He had a knack for lighting up a party, whether through his laughter or willingness to engage with others. When I needed to step back from leading our fellowship to focus on my health and work, I asked if he would take over. He immediately agreed.
That meant a lot to me. Leading a group like ours is about holding space for people facing physical decline, emotional strain, and difficult questions about life. From day one, Timothy embraced that responsibility.
Some of my favorite memories with him are simple yet profound. The first time he led a session, he used comic book characters to draw parallels with figures from Scripture in a way that resonated with our experiences. Another time, he surprised me for my 28th birthday with a cake and a pillow themed around my name, a gesture that profoundly touched me.
When my caregiver Glenda retired last year, he made the effort to visit just to say goodbye and wish her well. Living with Duchenne means relying heavily on caregivers, and he understood how much she mattered to me.
From left, columnist Shalom Lim and Timothy Chan attend the Participation–Inclusion in Action Conference 2024 at the Lifelong Learning Institute in Singapore, on Nov. 18, 2024. (Courtesy of Shalom Lim)
Even as his health declined, Timothy continued to live fully. Just last month, he brought his caregiver to a solo concert by the Filipina actress and singer Lea Salonga. Attending live performances with Duchenne requires extensive planning, yet he went anyway. That was Timothy, choosing life even when it was difficult.
In his final Instagram reflection on Good Friday, just 15 days before he passed, he wrote about slowing down and living more intentionally. His words were honest, vulnerable, and personal, reminding us that even in uncertainty, hope remains.
Timothy’s life reminds me of something I often return to in this column. Duchenne shapes us, but it does not define the depth of our relationships or the impact we can have. It may restrict our muscles, but it doesn’t limit our capacity to love, lead, and show up for others.
As I continue writing my column for Muscular Dystrophy News Today, my mission remains the same: to raise awareness of Duchenne, share my lived experience, and offer reflections that connect with others. This space is part of an ongoing journey, and I hope it continues to foster understanding, community, and honest conversation.
Tim, thank you for being my friend and my fellow traveler in this life with Duchenne. I will carry your example with me in my work, my faith, and the way I choose to live each day.
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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