“Living with Duchenne puts you in front of your own mortality. You’re kind of given a list of things that become impossible. Not that they necessarily do, but that’s the way it seems.”

Meditative and introspective, Mallory has spent ample time reflecting on the turns her life has taken. At the cusp of a new decade, entering her 30s, she has both reached and surpassed many milestones that, as a young person living with Duchenne muscular dystrophy (DMD), were not ever taken for granted. Diagnosed at nine years old with the rare neuromuscular disease, her relationship to her body, her future, and the larger world changed overnight but adapting to the implications of that has taken quite some time and resulted in an important personal transformation.

For Mallory, her DMD diagnosis and gender have always shared a connection. However, after years of struggling to accept herself—against her own expectations of what it meant to overcome the limitations placed on her by the disease—she was faced with a mental health crisis. As part of her journey to overcome these difficult hurdles, she began to transition, redefining herself as a woman.

This change not only helped Mallory strive toward self-acceptance, but by talking about her relationship to DMD and gender, she is asking important questions in the DMD patient advocacy space—one that is typically focused on the male experience. Being a transgender person with a rare disease can be isolating at times, but she knows that by telling her story it is opening space for more individuals like her to come forth to share their experiences and wisdom.