Born For This Stories

Dr. Johanna & Peter Hartley
  • 5.0 (7)
  • Parenting

Born for This Stories is a healing-centered podcast for parents navigating the unthinkable — from rare birth diagnoses and NICU trauma to holistic recovery and emotional resilience. Rooted in our own family's journey through our son's birth defect, we created this space to tell the stories we couldn't find when we were searching for hope. Each episode offers raw conversations, gentle truths, and holistic insights for families walking medically complex paths — because you deserve to feel seen, supported, and held. This isn't just about trauma. It's about transformation. Welcome to the place where healing begins — and where you'll always remember: You were born for this.

  1. 2d ago

    Dravet Syndrome, CBD & a Family's Move for Their Son: Gerardo's Story of Raising Alvaro

    When Alvaro was two months old, a seizure after a routine vaccine changed everything — but the diagnosis wouldn't come for three more years. In this episode of Born For This Stories, Gerardo joins from Orlando to share how his family left Ecuador in 2022 to give his son Alvaro the best possible life with Dravet syndrome, a rare, severe form of epilepsy caused by an SCN1A gene mutation. Host Dr. Johanna Hartley and Peter talk with Gerardo about the long road to diagnosis, the terror of status epilepticus and repeated ER trips, and the doctor in Ecuador who suspected Dravet early and sent samples to a specialized unit in Pamplona, Spain. He shares the turning point after starting CBD (approved by the FDA in 2018 for Dravet and Lennox-Gastaut syndrome) — better sleep, fewer emergencies, and seizures that finally stopped on their own — while being clear that CBD isn't right for every child and every case is different. This is also a story about a family holding together through the hardest seasons: family members who doubted the diagnosis and later understood, his wife's own breast cancer journey, the isolation of the early years, and the decision to stop hiding and start sharing. Gerardo speaks candidly about grief, faith, caregiver strength, the hope of upcoming gene therapy for Dravet, and the belief that a diagnosis is not a child's identity. Please note: this episode discusses seizures, serious illness, and grief. Take care of yourself as you listen. In this episode: What Dravet syndrome and the SCN1A gene mutation are Why Dravet is so often diagnosed years after the first seizure Status epilepticus and life before and after treatment Using CBD for Dravet — one family's experience and honest caveats Moving countries to access better schools and care for a medically complex child Caregiving through a spouse's cancer, grief, faith, and finding community Hope for Dravet gene therapy and why awareness matters Learn more and find resources through the Dravet Syndrome Foundation. If this story gave you something, share it with a parent who needs to know they're not alone. New stories every Monday. Come find us: 🎧 Website: bornforthisstories.com 📸 Instagram: @bornforthisstories 💛 HELD community for medical mamas Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

  2. Oct 26

    Costello Syndrome & the HRAS Gene: Bob's Story of Raising Annie Without a Road Map

    When Annie was born the day after Christmas, a room of 20+ doctors already knew something was different. The diagnosis came days later: Costello syndrome, an ultra-rare genetic disorder caused by a mutation in the HRAS gene, affecting only 200–300 children in the world. In this episode of Born For This Stories, Bob joins from London to share nine and a half years of raising Annie — a girl with a voracious love of peanut butter, princesses, and doing hair — without ever knowing what tomorrow will bring. Host Dr. Johanna Hartley and Peter talk with Bob about Annie's early diagnosis and the facial features that tipped doctors off, her care at Great Ormond Street Hospital, a thickened left ventricle followed for years by the same cardiologist, NG-tube and G-tube feeding, and the blended-diet approach Bob — from a food-loving Italian family — built himself to help Annie thrive (she's since had her feeding tube removed and eats on her own). He's honest about the harder realities too: learning disabilities and school support through an EHCP, the increased cancer risk that means oncology scans every six months, and living with deep uncertainty. At the heart of it is a turning point at the kitchen sink — realizing he couldn't "fix" this, and that he didn't have to. Bob shares how caregiving reshaped his purpose: becoming a health coach and personal trainer, and founding the charity Who Cares UK to help parents and carers of children with special needs look after their own health, built on the "put your own oxygen mask on first" principle. Please note: this episode discusses serious illness, childhood mortality, and cancer risk. Take care of yourself as you listen. In this episode: What Costello syndrome and the HRAS gene mutation are How an ultra-rare condition is diagnosed at birth Tube feeding, blended diets, and helping a child learn to eat Navigating school support, an EHCP, and special education needs Caregiver burnout and why looking after yourself isn't selfish Asking for help, building your "village," and letting go of the need to fix everything Learn more about Bob's charity, Who Cares UK, supporting the health of parents and carers of children with special needs. If this story gave you something, share it with a parent who needs to know they're not alone. New stories every Monday. Come find us: 🎧 Website: bornforthisstories.com 📸 Instagram: @bornforthisstories 💛 HELD community for medical mamas Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

  3. Oct 19

    Alpha-1 Antitrypsin Deficiency & a Double Lung Transplant: How Len Geiger Turned Survival Into a Second Life

    For years, Len Geiger kept getting "better" — antibiotics, an inhaler, rest — until a breathless night in front of his family on his 35th birthday forced the truth. The diagnosis: alpha-1 antitrypsin deficiency, a rare genetic condition causing irreversible emphysema. He'd already lost more than 60% of his lung function. In this episode of Born For This Stories, Len shares the full arc — from misdiagnosis and denial, to a double lung transplant in 2002, to nearly dying again months later in a mountain-biking accident, and everything it took to rebuild. Host Dr. Johanna Hartley talks with Len about the doctor-patient partnership that saved his life, living on supplemental oxygen, the five-year transplant waitlist, clinical depression, and the "before and after" phone call that shattered his sense of being invincible. Down to 15% lung function, Len got the call from the University of Virginia — and said yes because, as he puts it, he'd simply "run out of things to smile about." Then came the femur he shattered in five pieces, a fat pulmonary embolism, three weeks in an induced coma, and a 10-month comeback that ended at the finish line of the Peachtree Road Race — the world's largest 10K. Len went on to complete triathlons and a full marathon by racewalking, and formed a profound bond with the family of his donor, Corinne, a 14-year-old girl whose gift saved five lives. His story reached CNN, the Today Show, Sports Illustrated, and beyond, launching nearly two decades of patient advocacy and more than 500 presentations to physicians and COPD patients. Please note: this episode discusses serious illness, depression, and the loss of a young organ donor to suicide. Take care of yourself as you listen. In this episode: What alpha-1 antitrypsin deficiency is and why it's so often misdiagnosed The signs of emphysema and COPD that get dismissed in younger adults Why advocating for yourself and finding a doctor who listens can save your life What the double lung transplant waitlist and recovery are really like Organ donation, Donate Life, and meeting your donor's family Rebuilding after a devastating accident — and choosing to live, not just survive Alpha-1 can also present as liver disease and is the number two cause of pediatric liver transplant — where a transplant can be a cure. Connect with Len Geiger on LinkedIn for his weekly reflections on advocacy, resilience, and living fully after transplant. If this story gave you something, share it with someone who needs to hear that their story can become bigger than their diagnosis. New stories every Monday. Come find us: 🎧 Website: bornforthisstories.com 📸 Instagram: @bornforthisstories 💛 HELD community for medical mamas Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Alpha-1 Antitrypsin Deficiency & a Double Lung Transplant: How Len Geiger Turned Survival Into a Second Life

  4. Oct 12

    Holding Every Role at Once: Rare Disease, Alzheimer's Caregiving & Finding Yourself Again — Angela Calman

    Angela Calman was fighting a rare, life-threatening disease called amyloidosis — a year of chemo, heading into septic shock — when her father was diagnosed with end-stage Alzheimer's. Her mother now has early-stage Alzheimer's. Her daughter Cassandra lives with a rare genetic blood clotting disorder. In this episode of Born For This Stories, Angela shares what happens when every role you hold — patient, caregiver, and parent — needs you all at once, and what's left of you when they do. Host Dr. Johanna Hartley talks with Angela about a life spent as "the calm in the middle of the storm" — from working in journalism through 9/11 to leading communications at the Cleveland Clinic, 23andMe, Intuitive Surgical, and the FDA — and how her own diagnosis, a triplet pregnancy, preeclampsia, and the loss of her twins reshaped everything she thought she knew about control, illness, and strength. At the heart of the conversation is the turning point a best friend forced her to face: "If you're not okay, no one's okay." Angela opens up about caregiver burnout, forgiving yourself, and the millions of children who become caregivers for parents and grandparents — including the moments her own daughter had to step into that role far too young. She also shares the mission behind her foundation, Unfolding the Future, and its Trailblazer Lab — building "connective tissue" between patients, parents, scientists, physicians, caregivers, and policymakers to accelerate research into diseases that share common biological mechanisms of protein misfolding, from Alzheimer's, Parkinson's, and ALS to muscular dystrophies, ataxias, cystic fibrosis, and rare childhood cancers. It's a hopeful conversation grounded in one belief: all the elements to cure disease already exist — we just haven't found them yet. Please note: this episode touches on serious illness, pregnancy loss, and end-of-life care. Take care of yourself as you listen. In this episode: Living with amyloidosis and a rare disease diagnosis Being a patient, a caregiver for parents with Alzheimer's, and a parent all at once Caregiver burnout and why "if you're not okay, no one's okay" Children as hidden caregivers for parents and grandparents Pregnancy loss, preeclampsia, and losing control Raising a daughter with a rare blood clotting disorder Unfolding the Future & Trailblazer Lab — collaborative research across shared biological mechanisms Connect with Angela on LinkedIn (Angela Calmen) and learn more at unfoldingthefuture.org — visit the "Become a Collaborator" page to get involved. Come find us: 🎧 Website: bornforthisstories.com 📸 Instagram: @bornforthisstories 💛 HELD community for medical mamas — link below Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Holding Every Role at Once: Rare Disease, Alzheimer's Caregiving & Finding Yourself Again — Angela Calman

  5. Oct 5

    Losing My Daughter to a Rare Disease: Lisa's Story of Paloma & Pallister-Killian Syndrome

    When Lisa's daughter Paloma was three weeks old, a geneticist walked in with a stack of papers and a diagnosis Lisa had never heard of: Pallister-Killian Syndrome, a rare condition affecting only a few hundred children in the world. In this deeply moving episode of Born For This Stories, Lisa shares Paloma's whole journey — who she was, the fight, and the sudden cardiomyopathy (heart failure) that took her at seven years old, at home, in her mother's arms. Host Dr. Johanna Hartley sits down with Lisa — a mom of four with a master's in early childhood special education — for an honest conversation about raising a medically complex child, fierce parent advocacy, and life after loss. Lisa talks about Paloma's NICU stay, RSV, her G-tube, cortical visual impairment, hearing loss, and low muscle tone; the relief of finding an online community for her rare disease; navigating the Katie Beckett Waiver, Medicaid, and the med waiver waitlist in Florida; and the gift of giving Paloma her own voice through an AAC device. She opens up about pediatric hospice and palliative care, PICC lines, raising her other children with anticipatory grief, and the tender, joy-filled morning Paloma passed. Lisa also shares how she's honoring her daughter through the Paloma Lucia Foundation — donating medical equipment to families, working toward a pediatric respite house in Tampa, and turning grief into support for other medical parents. Please note: this episode includes the loss of a child. Take care of yourself as you listen. In this episode: Paloma's diagnosis with Pallister-Killian Syndrome and life as a medically complex family Becoming a fierce advocate for your child in the medical system Navigating Medicaid, the Katie Beckett Waiver, and Florida's med waiver waitlist Pediatric hospice vs. palliative care — and why they helped Giving a nonverbal child a voice with an AAC device Raising siblings with anticipatory grief Turning loss into legacy through the Paloma Lucia Foundation Connect with Lisa on Instagram @ourlittlesturdy or by email at ourlittlesturdy@gmail.com. Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Losing My Daughter to a Rare Disease: Lisa's Story of Paloma & Pallister-Killian Syndrome

  6. Sep 28

    Life After an MKD Diagnosis: Symptom Management, Flares & Rare Disease Advocacy (Part 2)

    What happens after the diagnosis — when the treatment helps, but it still does not change the disease itself? In Part 2 of Isabella and Gabriella's story, Johanna and Peter continue the conversation around mevalonate kinase deficiency, also known as MKD, and what it looks like to parent a child with an ultra-rare genetic disorder where every fever, cold, virus, or flare can become life-threatening. Isabella shares how her family moved from survival mode into rare disease advocacy by creating Cure MKD, a nonprofit focused on funding research, connecting families, supporting the MKD community, and working toward better treatment options and ultimately a cure. This episode explores the emotional reality of living with a rare disease, the limits of symptom management, the burden parents carry when they know the disease better than many providers, and why families often become the force pushing research forward. This conversation is about acceptance, advocacy, hope, and the impossible balance of protecting your child while still trying to build a life with joy, connection, and purpose. If you are a medical parent navigating rare disease, chronic inflammation, immune dysfunction, genetic disorders, hospitalizations, or the constant fear of the next flare, this episode is a reminder that your story matters — and that even the smallest steps can help move an entire community forward. This is Part 2 of Isabella and Gabriella's story. In this episode – How MKD treatment helps manage inflammation but does not cure the underlying disease – The emotional toll of living with constant infection and flare risk – Learning to balance protection, acceptance, and the reality that not everything can be controlled – Why every rare disease journey is different, even with the same diagnosis – How Isabella and her family moved from survival into advocacy – The founding of Cure MKD and the mission to fund rare disease research – Why rare disease families often have to drive the research forward themselves – The need for funding, patient registries, community calls, and better resources – How rare disease research can impact broader health conditions beyond one diagnosis – Isabella's message about hope, support, grief, and being okay with not being okay Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

  7. Sep 21

    Premature Birth & Rare Genetic Diagnosis: A Mother's MKD & NICU Story, Part 1

    Imagine your newborn is fighting for her life, but no one can tell you what's wrong... In this episode of Born For This Stories, Johanna and Peter sit down with Isabella, a mother from Brazil living in Switzerland, whose daughter Gabriella was born prematurely and later diagnosed with one of the rarest metabolic diseases in the world: Mevalonate Kinase Deficiency, also known as MKD. What began as an unexpected early birth quickly became a terrifying medical journey through NICU transfers, language barriers, liver inflammation, unanswered questions, rare disease testing, and the emotional weight of hearing that your child may not survive. Isabella shares the early days of Gabriella's life, the signs that something was wrong, and what it felt like to be separated from her newborn while trying to understand a diagnosis with almost no roadmap. This conversation explores rare disease parenting, medical uncertainty, newborn hospitalization, immune system dysfunction, genetic disorders, caregiver trauma, and what happens when parents become the research team because the answers are too rare to find easily. If you are a medical parent navigating the unknown, waiting for answers, living through NICU trauma, or trying to advocate for a child with a rare diagnosis, this episode will remind you that you are not alone. This is Part 1 of Isabella and Gabriella's story. In this episode – Isabella's unexpected premature birth story in Switzerland – Navigating birth and NICU care while her husband was overseas – The first signs that something was wrong with Gabriella's liver – Being transferred to a larger hospital without clear answers – What it feels like when your baby is sick and the diagnosis is still unknown – Language barriers, cultural differences, and medical communication challenges – Receiving a rare genetic diagnosis: mevalonate kinase deficiency, or MKD – How MKD affects the immune system, inflammation, organs, and infection risk – The emotional impact of hearing a devastating prognosis – The isolation and fear of bringing home a medically fragile child Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Premature Birth & Rare Genetic Diagnosis: A Mother's MKD & NICU Story, Part 1

  8. Sep 14

    Chordoma Diagnosis at 26: Brain Tumor Surgery, Recovery & Advocacy | Beth Finn

    What happens when the medical diagnosis changes everything — not for your child, but for you? In this episode of Born For This Stories, Johanna and Peter sit down with Beth Finn, a technology executive, brain tumor survivor, advocate, and board member of the National Brain Tumor Society. At just 26 years old, Beth was building her career and living her life when an MRI revealed a rare chordoma pressing against her brainstem. Beth shares what it was like to navigate a rare brain tumor diagnosis as a young adult, lean on her parents and partner for support, seek multiple surgical opinions, and ultimately choose the neurosurgical team she trusted with her life. Her story opens up a powerful conversation about self-advocacy, second opinions, medical decision-making, rare disease support, and the importance of finding doctors who bring both skill and compassion. This episode also explores what it means to survive something life-altering and later turn that experience into purpose. Beth reflects on denial, grief, humor, fear, family support, and how finding the brain tumor community helped her step into advocacy through Team Finspiration and the National Brain Tumor Society. If you or someone you love is navigating a brain tumor diagnosis, rare disease, major surgery, or the uncertainty of choosing the right medical team, this episode is a reminder that you are allowed to ask questions, seek more opinions, and fight for care that feels right. In this episode – Beth's rare chordoma diagnosis at 26 years old – How an MRI revealed a tumor pressing against her brainstem – The importance of second opinions for rare diagnoses and complex surgeries – Choosing a neurosurgeon based on expertise, trust, and bedside manner – How Beth's parents and partner supported her through diagnosis and surgery – Using humor, family, and community to face fear and uncertainty – What recovery looked like after brain surgery – Why patients and families need to feel empowered to advocate for themselves – Beth's journey from denial to brain tumor advocacy – Team Finspiration, the National Brain Tumor Society, and resources for newly diagnosed patients Share This Episode If this episode met you where you are, don't keep it to yourself. Someone in your life is sitting in a waiting room right now, googling words she never wanted to learn. Send her this one. Share it to your story, text it to a friend, leave a review — every share puts this in front of one more mama who needs to hear she's not alone. Know Someone With a Story to Tell? We're always looking for parents willing to share their journey — the messy middle, not just the highlight reel. If you or someone you know has walked a path other medical mamas need to hear about, we'd love to have you on the show. Reach out at info@bornforthisstories.com and let's talk. Join HELD HELD is here — empowered guidance for medical mamas who are done blaming themselves and want to feel less alone. Inside, we don't gatekeep information. We talk about what's real and raw, no performing required. Become a founding member now at https://held-mamas-connected.lovable.app/ You were Born for This.

    Chordoma Diagnosis at 26: Brain Tumor Surgery, Recovery & Advocacy | Beth Finn
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About

Born for This Stories is a healing-centered podcast for parents navigating the unthinkable — from rare birth diagnoses and NICU trauma to holistic recovery and emotional resilience. Rooted in our own family's journey through our son's birth defect, we created this space to tell the stories we couldn't find when we were searching for hope. Each episode offers raw conversations, gentle truths, and holistic insights for families walking medically complex paths — because you deserve to feel seen, supported, and held. This isn't just about trauma. It's about transformation. Welcome to the place where healing begins — and where you'll always remember: You were born for this.

Information

  • Creator
    Dr. Johanna & Peter Hartley
  • Years Active
    2025 - 2026
  • Episodes
    56
  • Rating
    Explicit
  • Copyright
    © 2025
  • Show Website
    Born For This Stories

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