My name is Leong Yao Wen, and I have Spinal Muscular Atrophy (SMA). Diagnosed at just 5 months old, I’ve never experienced walking and can’t move my entire body. One of my passions is playing Chinese chess, though I need my family’s help to move the pieces. I’m deeply grateful for their support, especially my wonderful mother who has cared for me and my three siblings since my father passed away when I was 5. She has taken on all roles in our household, ensuring we have everything we need. Living with SMA is incredibly challenging, not just for me but for my entire family. Despite the difficulties, my mother’s strength and dedication have been our pillar of support. She manages all the household responsibilities and ensures that my siblings and I receive a good education and all the care we need. Her resilience and love inspire me every day. My greatest hope is that treatment for SMA becomes more accessible and affordable. This would not only improve my quality of life but also provide hope and relief to many others battling this condition. Accessible treatment could mean the chance to move independently, participate more fully in activities we love, and reduce the immense burden on our caregivers. Thank you for taking the time to read my story and for your support and understanding. Together, we can advocate for better resources and support for SMA patients and their families.