It’s 11:15 p.m. “Charley,” I groan, “your parents will be home any second. You have to go to sleep.” I have been babysitting for the past six hours, and my last nerve is fraying.
“I just want to talk some more. Please . . .?”
Sitting cross-legged at the foot of his bed, I exhaustedly look at Charley Seckler’s endearing curls and his devilish seven-year-old smile. He knows he’s won.
“Fine, but not for long.”
The grin gets even bigger as Charley drops his head back down on to his pillow and continues jabbering right where he left off. As I put my head in my hands and watch him, I cannot help but return his smile.
In July 2004, Charley’s parents learned that his animated wit and lively personality harshly contrast with what is going on inside his body. A fatal genetic disorder called Duchenne Muscular Dystrophy is causing Charley’s muscles to deteriorate at a frighteningly rapid pace. For now, Charley is an adventurous, active child who adores sports, but by age ten, Charley will most likely be restricted to a wheelchair; he is not expected to live much past his late teens. Duchenne Muscular Dystrophy is the number one, most common genetic killer of children. Today, it affects over 60,000 boys and has no cure.
Four months after Charley’s bleak diagnosis, his parents, Tracy and Benjamin, initiated action against their son’s terrifying illness: they launched Charley’s Fund in order to team with leading researchers and physicians to create the first foundation whose only purpose is to fund a cure or treatment for Duchenne Muscular Dystrophy. Since the charity’s establishment four years ago, an astounding $13 million has been raised to support research for a cure, and scientists have been able to successfully target the disease’s one genetic mutation. They are on the brink of a major breakthrough.
The summer after my junior year, I worked as an intern in the Secklers’ home office, filing papers, organizing folders, and helping to create youth momentum through a “Facebook presence” for Charley’s Fund. It seemed as if everyday I would come across another article, video clip, or research paper that made me want simply to sit in a corner and cry. However, seeing the relentless drive in Tracy and Benji’s work and the unmistakable commitment motivating every volunteer, I became more determined to do my part.
As soon as my senior year began, I was in my principal’s office daily pleading for a chance to meet with him and discuss my proposal for a new school-based “Students in Action” Committee. My plan was to encourage students to become energized about community service and organize events through which we could increase awareness of and raise money for Charley’s Fund. With the first benefit coming up soon, our enthusiastic student body was on the right track to meeting our year-end goal of over $2,000. I cling to this with optimism.
“Rachel, you’re not listening!” I am back in Charley’s room, my drowsy head leaning against the wall, my eyes heavy with fatigue.
“Sorry, bud. Yes I am listening, just ask me again.”
Charley sits up, preparing for an obviously crucial question. “Someday, I’ll get old, like fifty, and probably be bald like Dad, right?” My heart drops inside my chest as I quickly blink back involuntary tears. The love I feel for this innocent seven-year-old boy, full of mischief, laughter, and potential, is overpowering. If I have anything to do with it . . .
“ . . . Yeah, Charley. Probably. Of course. When you’re like fifty.” I have no other answer.
The power of determination and hope is an unbeatable motivating force. Instead of being understandably overcome by sadness and despair, the Seckler family decided to fight back. Charley’s parents face a devastating obstacle with immeasurable fortitude and faith, and it is in their resolve that I find my inspiration. Every time I look at Charley or his beautiful family, I am reminded how precious life truly is and how much potential every individual holds. There is infinite power in people who want change so long as they are willing to fight ceaselessly to bring it about. I want to be one of those people. Life should never be taken for granted, moments should never be wasted, and chances to make a difference should never be ignored.
A sterling silver signature Charley’s Fund bracelet fits tightly around my wrist. It is engraved with a single word that serves as a daily reminder of my dedication in every battle that lies ahead for both Charley and his family and me in my own life: “Believe.” #