Denying The Odds

"hard"

Chapter one

"hard"

Imagine waking up one day, feeling as if the world has tilted off its axis. The simple act of standing becomes an insurmountable challenge. Walking even short distances feels like a monumental task, and your body protests in pain after just a few minutes on your feet. You yearn for the taste of your favorite foods, but even the act of swallowing becomes an arduous journey. For Mya Singletary, a freshman, this isn’t just a fleeting dream; it is her everyday reality.

Mya was born with RYR1 disorder, a rare condition that impacts skeletal muscle function due to mutations in the RYR1 gene. This disorder has introduced her to a world of persistent muscle weakness and daily obstacles that many would find overwhelming. Yet, despite the surgeries, the procedures, and the relentless pain that have characterized her journey, Mya refuses to be defined solely by her disability. She is a vibrant individual with dreams, passions, and a spirit that shines through the darkness.

As a child, Mya often found herself on the sidelines, watching her peers effortlessly engage in activities she longed to participate in. “My condition held me back from doing things that most kids take for granted,” she explained, her eyes reflecting a mixture of sadness and strength. “Jumping rope, running, riding a bike—these were activities that felt so far out of reach for me because my muscles were weak, and I struggled to maintain my balance.” Each missed opportunity was a reminder of her differences, and the emotional weight of those moments pressed heavily on her heart.

Every day presented a new challenge, teaching Mya lessons in resilience and perseverance. The pain she experienced was not merely physical; it permeated every aspect of her life. “It’s like my muscles are aging faster than they should,” she said, her voice steady despite the gravity of her words. “Every part of me hurts, every single day. This is just the reality of my disease.”

When puberty hit she grew older, the intensity of her pain increased, leading her to rely more on a wheelchair for mobility. “I had to start using my wheelchair when the pain became too overwhelming,” Mya recalled, her expression thoughtful. “I wasn’t in it much during seventh grade, but by eighth grade, I realized I needed it more and more.” It was a significant transition, one that required her to adapt to a new way of navigating the world.that she wasn't very happy about

Despite the physical limitations that threatened to confine her, Mya has never allowed her condition to define who she is. Today, she is working on digital art in school and graphic design, and her passion is she wants to be a graphic designer and make her own t-shirts right in her home