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.

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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.

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🎧 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.

Some diagnoses are discovered before birth. Others arrive as a surprise in the delivery room. Both can leave parents searching for answers they were never given.

In this episode of Born For This Stories, Johanna and Peter sit down with Kari and Ali, two mothers raising children with limb differences whose paths into medical parenting looked very different, yet led them to the same place: advocacy, connection, and community-building. This conversation focuses on their individual journeys — from prenatal ultrasounds and unexpected birth diagnoses to navigating early intervention, medical systems, and the emotional weight parents carry long after appointments end.

This episode is about what happens when families aren't given enough information or support — and choose to build it themselves.

This is Part 1 of Kari & Ali's story.

• Discovering limb differences through prenatal diagnosis versus surprise at birth

• Processing shock, grief, and uncertainty after diagnosis

• Navigating medical systems that often lack nuance and guidance

• Early intervention, occupational therapy, and physical therapy experiences

• The emotional labor parents carry that isn't captured in medical charts

• Advocating for children in healthcare and educational settings

• The gaps families encounter when seeking resources and community

• Why representation and visibility matter for children with limb differences

• Helping children build confidence, language, and self-trust

• How Kari and Ali found each other — and why connection changed everything

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.

There is a moment in many parents' lives when everything shifts — often quietly, in a doctor's office or an ultrasound room.

In this episode of Born For This Stories, Johanna and Peter sit down with Regina, a mother navigating the complex realities of raising a medically fragile child with DeGeorge Syndrome and a congenital heart condition. From a prenatal diagnosis to open-heart surgery just days after birth, Regina shares what it means to live inside long hospital stays, constant monitoring, and the emotional weight of advocating for a child who cannot yet speak for herself.

This conversation explores the unseen layers of medical parenting, including immune compromise, feeding challenges, developmental delays, and the responsibility of coordinating care across dozens of specialists. Regina's story is a powerful reminder that parental intuition matters, advocacy can be exhausting, and strength is often built quietly in waiting rooms and hospital hallways.

• Receiving a prenatal diagnosis of DeGeorge syndrome and congenital heart disease

• Preparing for delivery and immediate transfer to a children's hospital

• Navigating open-heart surgery in the first days of life

• Coordinating care across more than 20 medical specialists

• Managing immune deficiency, infusions, oxygen support, and feeding tubes

• Learning advanced medical care skills as a parent

• Advocating for a child during medical emergencies and hospitalizations

• The emotional toll of being dismissed while pushing for higher-level care

• Supporting siblings while managing complex medical needs

• Finding grounding through therapy, creativity, and community

• Looking ahead while accepting long-term medical care as part of life

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
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🎧 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.

Some parenting journeys reshape not only how you care for your child, but how you see the world.

In this episode of Born For This Stories, Johanna and Peter sit down with Marcia, a mother whose journey into medical parenting required her to navigate complex diagnoses, cultural expectations, and the ongoing work of advocacy. Marcia shares how becoming a parent to a child with unique needs challenged her assumptions, strengthened her voice, and ultimately transformed her sense of identity.

This conversation explores the emotional and practical realities of raising a child with complex needs — from navigating medical systems and therapies to balancing family dynamics, self-trust, and resilience. Marcia's story highlights the quiet strength required to keep showing up, even when the path forward isn't clearly defined.

This episode is for parents learning how to advocate, adapt, and hold space for both their child's needs and their own humanity.

• Entering the world of medical parenting and complex care

• Learning to advocate within healthcare and educational systems

• Navigating uncertainty, overwhelm, and long-term planning

• How identity shifts when parenting doesn't look the way you expected

• Balancing hope, realism, and daily responsibility

• The emotional labor of being a primary advocate for your child

• Finding strength through experience rather than certainty

• Why community and shared stories matter

• Redefining success, progress, and resilience

• What Marcia wishes more people understood about families like hers

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.

Some diagnoses arrive quietly, but they change everything.

In this episode of Born For This Stories, Johanna and Peter sit down with Mariangel, a Venezuelan-Canadian mother of two whose daughter was born with clubfoot. What began as shock and uncertainty after birth became a journey shaped by resilience, family support, and a deep commitment to making sure her daughter and other children like her were never left out.

Mariangel shares what it was like discovering her daughter's clubfoot after a C-section, navigating early treatment, learning to advocate within the medical system, and opening herself up to the community when she needed it most. Her story highlights how vulnerability creates connection — and how lived experience can inspire meaningful change.

This conversation also explores how Mariangel transformed daily challenges, like diaper changes and adaptive footwear, into a purpose-driven brand designed to support clubfoot families around the world.

• Discovering a clubfoot diagnosis at birth and processing early emotions

• The experience of navigating treatment, casting, bracing, and long-term correction

• How family history and community conversations shaped confidence and perspective

• The importance of asking questions and feeling truly supported by providers

• Why opening up created a village of unexpected support

• The day-to-day realities of caring for a baby in braces

• How frustration turned into creativity and purpose

• Creating adaptive clothing to meet a need that didn't exist

• Ensuring children with clubfoot feel included, comfortable, and celebrated

• Advice for parents learning to balance advocacy with presence and joy

Little Clubbers Apparel was created to support children with clubfoot and other orthopedic needs through thoughtful, inclusive design that makes everyday moments easier for families.

🌿 Website: www.littleclubbersapparel.com
📸 Instagram: @Littleclubbers_apparel
📘 Facebook: @LittleClubbers Apparel
🎵 TikTok: @Littleclubbers_apparel

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.

Healing doesn't always look the way we expect, and it rarely happens all at once.

In the final part of Rebecca's three-part story, we explore what long-term healing looked like after stepping fully into a gut-centered, holistic approach for her daughter's severe juvenile idiopathic arthritis. This episode focuses on the slow, steady work of rebuilding the immune system, restoring gut health, and creating an environment where healing could actually take root.

Rebecca shares how food, sourcing, detoxification, nervous system regulation, and community support became the foundation for her daughter's recovery, and how this journey reshaped the health of their entire family. This conversation is about patience, trust, and learning to measure progress differently when you're healing from chronic illness.

This episode brings Rebecca's story full circle and offers hope to parents who are deep in the day-to-day work of supporting a child with autoimmune disease.

• How gut health became the cornerstone of healing juvenile idiopathic arthritis

• The role of the GAPS diet in immune regulation and inflammation reduction

• Why healing from autoimmune disease is non-linear and deeply individual

• Food sourcing, nutrient density, and reducing environmental stressors

• Supporting detox pathways through daily habits and lifestyle choices

• Navigating school, social situations, and food boundaries during healing

• How emotional regulation and nervous system support affect physical healing

• The importance of consistency, patience, and parental leadership

• How community support sustained their family through a long healing journey

• What life looks like now and how this experience changed everything

👣 Share your story or connect with our community at bornforthestories.com
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