In this profoundly moving episode of our podcast, I sit down with Lesa Brackbill, a mother who transformed her unimaginable grief into a powerful force for change. Lesa shares the heart-wrenching story of her daughter's battle with Krabbe disease, a rare and terminal genetic disorder that was diagnosed when her daughter was just five months old. Despite the devastating loss of her daughter at only 20 months, Lesa's story is not just one of sorrow, but also of resilience, love, and a determined fight for the future health of newborns everywhere.

Lesa takes us through her family's journey, detailing the early days of her daughter's life, the moment they received the diagnosis, and how they navigated the challenges that came with Krabbe disease. She speaks candidly about the emotional toll, the impact on her family, and the moments of joy and love that shone brightly even in the darkest times.

Beyond sharing her personal story, Lesa discusses her passionate advocacy for newborn screenings, emphasizing the critical importance of early detection in saving lives and improving outcomes for children with genetic disorders. Her work aims to ensure that no other family has to endure the pain of losing a child to a disease that could be detected and potentially treated if caught early through newborn screening.

This episode is not only a tribute to the strength of a mother's love but also a call to action for listeners to support and learn about the importance of newborn screenings. Join us for an emotional, enlightening, and inspirational conversation with Lesa Brackbill, a remarkable advocate who is making a difference in the world, one newborn at a time.

If you would like to read Lesa's book, Even So Joy you can find it on Amazon. You can also connect further with her on Instagram @evensojoy.