It seems like just yesterday I was living in a perpetual state of chaos. My life was going a million and one miles per hour, and there was no stoplight in sight. Most days, I was struggling to make ends meet, always trying to juggle healing my body, writing my weekly column, working a part-time job, and planning a cocktail reception fundraiser for over 300 guests.
As I mentioned in a previous column, the weeks leading up to this event felt like a never-ending whirlwind of daily to-dos. And each time I checked an item off the list, I added two more. Between overseeing every task, maintaining constant communication between our committee members, donors, and staff at the venue, and tackling my own set of responsibilities, my body never stopped. My brain never stopped. Even when I went to bed, my mind would race into the early hours of the morning thinking about everything that needed to be done.
But even in the toughest, most chaotic season of planning, I wouldn’t change a thing.
I wouldn’t change a thing because I’ll never forget the time and place when I agreed to take on this new endeavor of fundraising. A few years had passed since I last showed up on the fundraising scene, and I had spent the last few months itching to get back into it. So when my best friend’s mother asked for my thoughts about doing a fundraiser it felt like divine intervention, and I couldn’t ignore it.
I wouldn’t change a thing because I’ll always remember that rainy day on Oct. 21, 2016. My parents and I were on our way to Boston Children’s Hospital to deliver a donation (from the proceeds of that year’s fundraiser) to my neurologist, who heads the SMA clinic there along with other research efforts. His office was filled with stacks of books and papers to the point that his desk was barely visible. It was there that he spoke the words I had waited my whole life to hear.
“There is a drug on the horizon,” he stated in a heavy, Greek accent. “It’s called nusinersen.”
Two months later, nusinersen (more commonly known as Spinraza) was commercialized in the United States.
More recently, I was speaking with one of the nurse practitioners from the hospital and asking her about what Spinraza meant for infants being born today. I was expecting to hear some statistics and data they’ve received from studies, but instead, her words clung right to my heart leaving a permanent mark.
“I no longer have to go home and bang my head against the wall after telling a parent that their newborn baby has SMA,” she said, simply yet poignantly.
At that moment, I was quickly reminded of why I do what I do for the SMA community. At that moment, all the stress and worry that lead up to every fundraiser suddenly became more worth it than ever. So, at that moment, I vowed to myself I would never change a thing.
Note: SMA 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 other 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 SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.