Columns

It’s hard to say exactly what impact rare disease awareness has had on our world. What has it taught us? Those of us with SMA and other rare diseases are keenly aware of the benefits that years of advocacy, research, fundraising, and education have brought to our disability communities…

As many readers of this column may know, SMA is considered a rare disease. But what some may not know, or simply overlook, is that people with SMA don’t share the exact same experiences. When I think of my experiences, I think of math class —…

Rarely have I not received the best treatment available for my SMA. Doctors and nurses have been proactive in giving me aggressive care to prevent me from getting sick. But when I do, my medical team, including my mom, is aggressive enough in its care to prevent me…

My voice was off-pitch. I was too nervous. Though the casting directors for Singapore’s nationally televised talent show for children, “One Minute of Fame,” gave no obvious reaction, I realized the problem the second air left my lungs. Still, with all the boldness of an 8-year-old covered in makeup who’d…

A gentle hand shook me awake. The practice of “shaking me awake” originated with my caregiver, Danielle, who was accompanied by her 3-year-old daughter. Elena took it upon herself to wake me up. Every morning, a tiny little hand would touch my face, followed by a whispered warning. “Five,”…

Life doesn’t always flow the way it’s supposed to, and by “flow,” I mean literally. I’ve recently been experiencing a lot of issues with my nasojejunal (NJ) tube. It’s become more difficult to place each time it needs to be exchanged. It clogs much more easily than…

I have a gift inherited from my late musician mother. Simple melodies or complete orchestral scores, favorite old songs, two-piano music we played, my own original tunes, or a conglomeration of all of the above play inside my head, on demand or out of the blue. James Taylor’s version…

Who would’ve thought that something as mundane as straws could become a hot topic? Yet in recent years, they’ve been featured in countless news stories, sparked debate, and been targeted by well-meaning environmental movements. I like to think I know a few things about straws. I’ve been utilizing them daily…

Sobbing a blubbery and snotty cry while waiting for an elevator was likely my rock-bottom moment in January. I’d just left the interventional radiology department after another stressful procedure at the hospital. Thankfully, it went as easily as it could have, given the difficult situation. But something…

Once upon a time, I was a child who grew up with fairy tales, love songs on the radio and CDs for my Walkman, young adult romance novels, and romance dramas on TV and in films. Romance was — and is — as ubiquitous as Valentine’s Day discounts for chocolate…