Lindsay's Story: Navigating EEC Syndrome, Rare Genetic Diagnosis, and 16+ Surgeries

A rare genetic diagnosis during pregnancy. A cleft lip and palate. Limb differences. Missing teeth. Chronic infections. Sixteen surgeries — and counting. In this episode of Born For This Stories, we sit down with Lindsay, a mom raising her 10-year-old son Ronan who was diagnosed in utero with EEC syndrome (Ectrodactyly Ectodermal Dysplasia Cleft), a rare genetic disorder that affects development of the hands, feet, teeth, skin, sweat glands, eyes, and more. This conversation is about more than medical complexity. It's about receiving a life-altering diagnosis during a routine ultrasound. It's about guilt, resilience, research, advocacy, and building a community when you didn't know one existed. It's about traveling for specialized pediatric care, preparing for surgery after surgery, and still raising a child who plays sports, creates art, and dreams big. If you are parenting through a rare disease diagnosis, congenital differences, cleft repair, chronic medical needs, or a long surgical journey, this episode will remind you that you are not alone — and that community changes everything. In this episode – What EEC syndrome is and how it presents differently in every child – Receiving a prenatal rare genetic diagnosis and processing guilt – Navigating cleft lip and palate repair, limb differences, and dental reconstruction – Managing chronic medical complications and multiple surgeries – Traveling for specialized pediatric care – Finding support through the National Foundation for Ectodermal Dysplasias (NFED) – Accessing nonprofit and community resources for medical families – Raising siblings within a high-medical-needs household – The power of educating your community to build support Share Your Story & Find Born For This Stories If you are walking a rare diagnosis journey — whether prenatal, newly diagnosed, or years into treatment — we would be honored to hold space for your story. Share your story at bornforthistories.com Follow along on Instagram @bornforthiststories Subscribe and leave a review to help more families navigating rare diseases and congenital conditions find this community New episodes release every Monday. Wherever you are in the journey — diagnosis day, surgery prep, recovery, or long-term maintenance — you do not have to carry it alone.