I’m Jessica from Melbourne, Australia, and I’ve been living with GNE Myopathy for over a decade since my diagnosis at the age of 24. This disease has been an excruciating roller coaster, reshaping my life in ways I never could have imagined.

After losing my ability to walk long distances and later my ability to drive following the birth of my first child, I was confronted with the full force of this disease—not just physically, but mentally. The loss of independence was overwhelming, and the weight of anxiety and depression felt unbearable. But I refused to let GNE define me.

Determined to show my daughter that I could not only survive but thrive, I shifted my focus to what was within my control. I fought to reclaim my mental strength, faced my fears head-on, and made the empowering decision to welcome my second child in 2022—choosing faith over fear.

This journey has given me resilience beyond measure. It has fueled my passion for advocacy, driving me to work toward greater accessibility and rights for people with disabilities. Today, as a certified patient advocate for GNE, I am deeply committed to raising awareness and supporting those affected by this life-changing disease.

Though GNE has tested me in ways I never expected, it has also revealed the true power of inner strength. I am grateful for the lessons it has taught me, and I am proud to show my daughters that no matter the obstacles, anything is possible.