About the author

Jessica Discepoli is the founder of the Luca Rising Foundation, author of the Luca Rising blog, advocate for congenital athymia awareness, and most importantly, Luca’s mom. After her son Luca was born with congenital athymia, an ultra-rare and life-threatening immune disorder, Jessica transformed unimaginable hardship into a mission rooted in advocacy, awareness, and community support.

When Luca’s medical journey became increasingly complex, Jessica made the life-changing decision to step away from her career to fully devote herself to his care, survival, and the growing mission surrounding congenital athymia advocacy. What began as a mother fighting for her son evolved into a lifelong commitment to helping other medically complex children and families facing similar battles. Through years of hospitalizations, isolation, therapies, medical equipment, and uncertainty, she became not only Luca’s caregiver, but also a relentless advocate determined to create change far beyond her own family’s story.

Through the Luca Rising Foundation and the Luca Rising platform, Jessica has become a powerful voice for medically complex children and rare disease families. She works tirelessly to raise awareness for congenital athymia, support families navigating isolation and medical trauma, and advocate for better understanding and resources for rare disease communities. Her work extends from grassroots family support to national advocacy efforts, including traveling to Washington, D.C. to speak with legislators and raise awareness for children impacted by congenital athymia and related medical complexities.

Known for her emotionally impactful storytelling and authentic voice, Jessica is also a guest speaker at universities, hospitals, and plasma centers where she shares Luca’s journey and the realities of raising a medically complex child. Her advocacy centers on transforming pain into purpose while helping families feel seen, supported, and less alone. Through public speaking, writing, fundraising, and community engagement, she continues to build a movement fueled by resilience, hope, and the belief that every medically complex child deserves the opportunity to thrive.

Jessica’s work has touched families across the rare disease community, creating meaningful connections, fostering awareness, and inspiring others to rise through adversity together.