In this moving episode, I speak with Sarita Edwards, a mother, advocate, and founder of the E.WE Foundation, about her family's journey after her son Elijah was diagnosed with Trisomy 18 (Edwards syndrome). Sarita shares the emotional rollercoaster of receiving Elijah’s diagnosis at 22 weeks pregnant, the constant message of hopelessness delivered by healthcare professionals, and the overwhelming fear of loss that followed. Sarita explains how she fought this fear with hope and love, sharing a strong message of resilience.

Elijah, now eight years old, defies all medical expectations. Sarita’s deep reflections explore how grief, uncertainty, and stigma transformed into purpose, acceptance, and connection. Through their journey, she and her family built a foundation to support other families navigating rare diagnoses, aiming to provide practical answers to questions that many face in times of uncertainty.

This episode is a powerful reminder of how lived experience changes lives, and how hardship can lead to a sense of purpose, and be turned into positive actions.

The song that Sarita chose is Even If by MercyMe.

In this emotional episode of the podcast, Sierra speaks about her journey as a mother to Jack, who was diagnosed with the ultra-rare Warsaw Breakage Syndrome. She opens up about the complexities of Jack’s medical challenges, including a congenital heart defect, microcephaly, and severe growth restriction, all of which were discovered early in her pregnancy. Sierra emphasizes the importance of trusting her instincts and being Jack’s fiercest advocate in a healthcare system that often left her feeling overwhelmed. She turned her experience into action by creating Librarey, sharing what she learned to help parents in similar situations.

Sierra chose the song Make You Feel My Love by Bob Dylan.

Rachel's daughter, Charlie, was born with the rare condition GA2 (Glutaric Aciduria type 2). It was identified very early on thanks to newborn screening, but unfortunately it has a very poor prognosis when diagnosed so early. We talk about how GA2 affected Charlie, the importance of communities for parents dealing with such conditions, and the benefits of grief counseling. Rachel also shares the beautiful life lesson Charlie has taught her.

The song Rachel selected is I reach for the sky by Social Distortion.

Bianca is the mother of Lotta, who was born with Rett Syndrome. In this discussion, Bianca shares about her daughter's diagnosis, the lack of support when they received this life-changing information, and how they have adapted to it. We discuss the level of care Lotta requires and the impact on the family life. Bianca also shares the many emotions she has felt over the years, as she went through this journey with her daughter, and how caring for her has changed her.

The song Bianca chose is Easy Little Song by A.J. Jenkins.