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.

– 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

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.

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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.

Different diagnoses. Different surgeries. Different waiting rooms. And yet — the same questions whispered in the dark.

In this solo episode, hosts Johanna and Peter step back from guest interviews to reflect on the patterns they keep hearing from medical parents across the world. From hypospadias and juvenile rheumatoid arthritis to limb differences, clubfoot, and DiGeorge syndrome, the diagnoses may vary — but the emotional experience is strikingly similar.

If you are a caregiver navigating a birth defect, chronic condition, unexpected diagnosis, multiple surgeries, or lifelong medical care, this episode speaks directly to you. We unpack the quiet self-doubt, the late-night research spirals, the guilt, the minimization of your own story, the isolation inside Facebook groups, and the weight parents carry long after procedures are complete.

This is a conversation about validation. About caregiver burnout. About advocacy. About becoming an expert in your child's condition overnight. And about why no story is "too small" to matter.

You are not dramatic. You are not behind. And you are not alone.

– The common emotional patterns shared by medical parents
– Why caregivers minimize their own stories
– The relativity of trauma and diagnosis severity
– Navigating hypospadias and invisible birth defects
– Becoming your child's primary advocate in the medical system
– Late-night "Dr. Google" spirals and research fatigue
– The limitations of online support groups and Facebook communities
– Caregiver burnout and emotional regulation
– Processing guilt and questioning what caused a diagnosis
– Speaking from scars versus open wounds
– Why safe, nonjudgmental storytelling spaces matter
– The impact of hearing "me too" in a waiting room
– Building community beyond just a podcast

If this episode felt familiar, that is not an accident.

If you are parenting through a medical diagnosis, surgery season, chronic care, early intervention, or long-term follow-up — this space was built for you.

🌿 Share your story: bornforthiststories.com
💛 Follow along on Instagram: @bornforthiststories
🎧 Subscribe, rate, and share Born For This Stories to help more parents feel less alone

New episodes release every Monday.

Wherever you are — the waiting room, the research phase, the recovery season, or years beyond — you do not have to carry this alone.

What happens after the diagnosis? After the shock fades? After the appointments end and the real work of parenting begins?

In Part Two of Kari and Ali's story, we move from isolation to action. This episode dives into what it looks like when parents realize the systems meant to support them are incomplete — and choose to build something better. From navigating COVID isolation to organizing 150-plus family meetups, launching a global podcast, and founding a 501c3 nonprofit, Kari and Ali are redefining what advocacy and community look like for families raising children with limb differences.

If you are parenting a child with a congenital limb difference, navigating early intervention, searching for adaptive resources, or simply longing for connection after a diagnosis, this conversation is for you.

This is Part 2 of Kari & Ali's story.

– The isolation families experience after a limb difference diagnosis
– How COVID intensified the emotional and logistical challenges of finding community
– Why early intervention access and reevaluation advocacy matter
– The power of in-person meetups for children with limb differences
– Organizing large-scale community events during Limb Loss and Limb Difference Awareness Month
– Launching the podcast Parenting Children with Limb Differences
– Interviewing parents, clinicians, adaptive sports leaders, and children's authors
– Creating a centralized resource hub for congenital limb differences
– Founding the Limb Difference Collective Foundation (501c3)
– Making community events financially accessible for families
– Adaptive sports, national competitions, and travel realities in the disability space
– The "Hugs in a Box" initiative for newly diagnosed families
– Why representation, translation, and accessibility matter in advocacy

If today's episode resonated with you, we invite you to share your story and connect with our growing community of families navigating diagnoses, differences, and healing.

🌿 Share your story: bornforthiststories.com
💛 Follow along on Instagram: @bornforthiststories
🎧 Subscribe, rate, and share Born For This Stories to help more parents feel less alone

You were born for this — and you don't have to carry it by yourself.