A magazine article was my family’s lifeline during my SMA diagnosis
How a stranger's story helped my parents navigate a difficult period
In 1991, before my family had ever heard the words “spinal muscular atrophy” (SMA), my parents desperately sought out answers to my developmental delays. At just 3 months old, I began showing signs of weakness. I couldn’t roll over, wasn’t able to hold my head up, and had minor tremors in my hands. It took weeks for my parents to find the right doctor and have a muscle biopsy performed on me, which led to my SMA diagnosis.
During that waiting period, they feared the worst. So, in the days leading up to the results, my grandparents decided to take my parents to a psychic for a better look into my future and, hopefully, some peace of mind. My father wasn’t too keen on the idea and decided to wait in the car with a Reader’s Digest magazine he picked up on the way there. Little did he know that an article in the magazine was about to predict my future better than any psychic ever could.
Though I’ve heard my father recount this story numerous times, it wasn’t until very recently that I read the magazine article for the first time. A few sentences in, I felt chills at the parallels to my own life. It was about a young girl living with Werdnig-Hoffmann disease, also known as SMA type 1, and her struggles with hospitalizations, navigating school, and not receiving enough care at home.
But most importantly, it highlighted her vivacious personality, her hopes and dreams, and the tale of a young teenager just trying to live as normal a life as possible. The article was titled “Lifeline to Hope.”
As my father read this story for the first time in the back of my grandparents’ car, he had no idea that it would soon become my family’s very own lifeline to hope. In fact, he didn’t give it much thought at all. After all, the psychic told my mom that I had a simple blood disorder that would heal on its own. (I’m not sure where this person earned their credentials. That’s a story to ask my parents about another day.)
The power of storytelling
A few weeks later, my pediatrician delivered the news of my SMA diagnosis and assigned two short years to my life. In the midst of my parents’ devastation, that article gave them strength. Back then, families with SMA didn’t have the resources we have today. My parents weren’t able to connect with other families in similar situations, many doctors didn’t know about the disease, and the internet wasn’t readily available for my parents to do their own research.
Yet, by some twist of fate, they had this magazine, which allowed them to hold on to hope that their baby girl would someday thrive.
Whenever I think about this story, I see it as a true testament to the power of storytelling. This family didn’t have a clue who we were, yet their story profoundly affected my parents’ lives in ways that cannot be put into words. It’s why we still discuss it all these years later.
Whether it’s through a magazine, a column, or a simple conversation, I’ve learned that sharing what life with SMA is like builds connections, and those connections matter. Our stories matter. The way we live, the words we choose to say, and the vulnerability we express matter and can have a ripple effect on those around us.
And sometimes, it’s those tiny ripples that can change someone’s life.
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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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