Debunking Myths About Living With a Rare DiseaseSince spinal muscular atrophy is part of a rare disease, I’m taking this opportunity to recap the journey. To be able to share my experiences and stories for good is...reactionscomments
Embracing The ChallengesI had the opportunity to participate in a video production for Rare Disease Day 2025, and it was a truly wonderful experience. The shooting took place in an entirely different...reactions1comment
Best Experience EverI was thrilled to be nominated as one of the finalists for the Women of the Future Award - Asia. The experience itself was nothing short of extraordinary and gave...reactionscomments
Overcoming Obstacles From Painting To The FieldNavigating the challenges associated with neurodegenerative conditions has always been an arduous journey, filled with ups and downs. Living with spinal muscular atrophy (SMA) feels akin to managing a full-time...reactions1comment
The Game Changer-BiPAPI remember this day well. The start of an unbelievable journey. Who would have thought I needed to wear a BiPAP? It has never come to my mind. I wore...reactionscomments
On Being Told To Live Independently“You should learn to live independently. There’s a cerebral palsy patient that renovated her house and lives alone” “You should learn how to cook. At least fry some eggs. If...reactions1comment
Art and SMA12 artworks in 7 months. In Nelson Mandela's words, “It always seems impossible until it’s done”. Who would’ve thought I managed to paint these? I make art for a living...reactions1comment
Friends That Travel Together, Stay TogetherPeople say travel friendships can last a lifetime. With traveling, it shows how solid your friendships are because you will know how they are through day and out. Just like...reactionscomments
Dealing With Grief During Festive SeasonsEvery year when we come to the festive season (for us in Malaysia it's Hari Raya Aidilfitri), it is the hardest time for me. Not just for me, but also...reactions1comment
Feeling Emotional About Things People SayI gave up whenever someone asked, “Oh, what is she doing now?" (She as in me.) And your family answered it with, “Nothing. She just sits at home. Doing nothing.”...reactions1comment
Define LoveDefine love. It would be a broader definition for everyone. As I moved into the adulthood phase I started to get involved in more things. Of course one of the...reactionscomments
My Life as an Artist, Not SMA, Defines MeThis year's theme for SMA Month was SMA does not define us. For Ainaa Amaili, a patient leader for SpinalMuscularAtrophy.net, her life as an artist is one way she defines...reactions3comments
A Moment That Changed MeAugust is not just SMA awareness month, it is also a month when my sister passed away. 19 August 2013, a date that I will never forget. She was only...reactions5comments
Goodbye 2021, Hello 2022New year’s resolution: avoiding hospital stays. Preferably try to stay healthy and happy as much as I can. Because looking back at the previous year gave me all the hospital...reactionscomments
Finding HopeIt broke my heart when one of my good friends' daughters was diagnosed with SMA. The diagnosis was tentative, as he was waiting for a genetic result. But I know...reactionscomments
My Life with SMAIt all started here Mom was wondering why a bubbly little girl who can already speak at 10 months old cannot crawl but managed to sit. She skipped a few...reactions1comment
