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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
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.”...Reactions0reactionsComments1 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments3 comments
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...Reactions0reactionsComments5 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments0 comments
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...Reactions0reactionsComments1 comments
