A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story
Release Date: 04/16/2025
From Anxiety to Answers: a journey to a PANDAS diagnosis (269)- Camryn's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
When Camryn’s fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple “all clear” evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child’s privacy, supporting siblings, starting trauma therapy, and building margin for joy. This is a...
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A daughter with Down Syndrome, AVSD and Pulmonary Hypertension [REPOST] (268)- Courtney's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this reposted episode, Courtney shares her journey of receiving her daughter Annie’s Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie’s resilient and joyful spirit. Resources mentioned in this episode: – A resource hub for...
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A Tuberous Sclerosis Complex Diagnosis and Finding Strength in Vulnerability (267)- Erin's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Tuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women’s health coach and mom of four, Erin Trier, shares her family’s eight-year journey to finally receiving a TSC diagnosis for her son, Brendan. She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization systems that help her family thrive—including her genius laundry strategy. She also shares why...
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Nursing and Motherhood After a Prenatal Diagnosis of Achondroplasia (266)- Victoria’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Victoria Garcia—lovingly known as “Nurse Vic”—shares her powerful journey as a nurse and mom of two, including her daughter Julia, who was diagnosed with achondroplasia during pregnancy. In this heartfelt episode, Victoria opens up about the emotional and logistical challenges of navigating a rare diagnosis while working at the very hospital where she received the news. She talks about the strength she found in community, the importance of informed advocacy, and what it truly means to be in alignment with your purpose. 🎧 This is an inspiring listen for any parent facing a diagnosis...
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A Mother-Daughter Journey Through Crohn’s Disease, Storytelling, and Advocacy (265)- Quinn + Kirby's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this moving and hope-filled episode, mother-daughter duo Quinn Wyatt and Kirby Larson share the deeply personal story behind their middle grade novel, Gut Reaction. Diagnosed with Crohn’s disease as a teen after years of being dismissed, Quinn opens up about her experience living with a misunderstood chronic illness. Kirby, an acclaimed author, reveals what it took to revisit this painful chapter of their lives and co-write a book that helps kids feel seen. Together, they explore diagnosis delays, self-advocacy, parenting through illness, and how their storytelling became a form of...
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An Unexpected Diagnosis at 22 Months: Infantile Spasms and Advocacy [REPOST] (264)-Kate's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave.” – Kate, founder of Brave Bears Club In this reposted and newly updated episode, we revisit Kate’s emotional and empowering story as she shares her daughter Charlotte’s unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy around the world. Kate reflects on the early signs of IS, how her instincts as a mom led...
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From Bedside Nursing to Butterfly Pig: A Mission to Reduce Pediatric Medical Trauma Through Play (263)-Mary’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“The tears legitimately just turned to curiosity—and she wanted to play.” – Mary Jenner, BSN and Founder of the Butterfly Pig Meet Mary, a former pediatric oncology nurse turned full-time entrepreneur and founder of The Butterfly Pig. In this heartfelt episode, Mary opens up about how play transformed her bedside care, her daughter’s unexpected NICU stay due to HIE, and how she’s now helping families and clinicians reduce pediatric medical trauma through imaginative medical play tools. Listen in to discover how Mary's passion is revolutionizing how we empower kids and...
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"Can You Invite Her In?" — A NICU Story: Healing & Advocacy [REPOST] (262)- Tanisha's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“I was pumping in the NICU, feeling completely disconnected—and my husband looked at me and said, ‘Can you invite her in?’ That moment changed everything. A nurse handed me a swab, I gave my baby colostrum for the first time, and I thought, ‘I’m a mommy.’” – Tanisha NICU mom and advocate Tanisha shares her deeply moving journey through an unexpected fetal diagnosis, a 157-day NICU stay, and the powerful moments that helped her reconnect with motherhood. Diagnosed at 20 weeks with Lower Urinary Tract Obstruction (LUTO)—a rare, life-threatening condition—Tanisha’s son...
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How to Talk with Kids About Disasters, Illness, and Other Tough Topics
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In the wake of recent flooding in Central Texas, Katie Taylor—child life specialist and mom—pauses the regularly scheduled episode to speak directly to parents navigating uncertainty and grief. Whether you're facing a natural disaster, a scary news event, illness, or another tough moment, Katie offers a compassionate and practical framework to help guide difficult conversations with your child. Drawing from both her professional experience and personal moments with her own daughter, Katie walks you through a 5-step process to ensure these talks are grounded in safety, emotional connection,...
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When your Child is Diagnosed with Leukemia: Wisdom from a Cancer Parent (260)- Laura's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
When Laura's daughter was diagnosed with leukemia, her world stopped. What followed was a powerful journey through fear, resilience, and fierce advocacy. In this episode, Laura DeKraker Lang-Ree—a lifelong educator and now author of The Cancer Parent’s Handbook—opens up about the most terrifying day of her life, how she transformed pain into purpose, and why parent-to-parent support is critical in the childhood cancer community. Her reflections are raw, heartfelt, and offer wisdom for every parent facing a medical diagnosis with their child. 🗝️ 5 Key Topics in This Episode: ...
info_outlineWhat if every milestone your child was supposed to reach came with countless curve balls? For Alexis Kaplan, motherhood quickly turned into a journey of advocacy, strength, and unwavering love as she navigated her daughter Gabby’s complex and rare health conditions.
In this moving episode, Alexis shares:
✅ The moment her newborn was rushed to the NICU with a collapsed lung
✅ How her daughter’s recurring infections led to a diagnosis of immunodeficiency and collagenous gastritis
✅ The emotional toll—and strength—of being the medical historian and advocate for a medically complex child
✅ How weekly infusions, therapy, and figure skating are helping her daughter thrive
✅ Her advice for parents facing rare, chronic, or undiagnosed conditions
This is a must-listen for anyone caring for a child with complex medical needs, healthcare providers who want to better understand the family perspective, and parents looking for inspiration and connection.
Timestamps & Key Topics
⏱️ [00:00] – Meet Alexis Kaplan
Mother of two, former PR pro, and fierce advocate for her daughter Gabby
⏱️ [03:00] – From a Healthy Start to a Medical Emergency
Gabby is born with a spontaneous pneumothorax and was immediately taken to the NICU
⏱️ [08:00] – Life After NICU
The strange silence in the hospital room and the emotional weight of an unexpected start
⏱️ [10:00] – Feeding Struggles and Early Signs Something Was Wrong
Eczema, weight loss, food intolerance—and a mother’s instinct in full force
⏱️ [14:00] – The Fevers Begin
Raging fevers, unrelenting illness, and a trip to the ER that revealed double pneumonia and RSV
⏱️ [19:00] – ENT Visits, Hearing Loss, and the Power of Child Life
From audiology tests to the first Barbie from a Child Life Specialist—how support changed their hospital experience
⏱️ [22:00] – Asthma, Immunology & The First “Red Flag”
Gabby’s pulmonologist recommends deeper testing, leading to a pivotal moment in her diagnosis journey
⏱️ [24:00] – Periodic Fever Syndrome & Tonsillectomy
A working diagnosis leads to aggressive treatment—but symptoms persist
⏱️ [26:00] – Gastroenterology, Scopes & the Search for Answers
A rare diagnosis: collagenous gastritis—so rare, the doctor had never seen it before
⏱️ [29:00] – The Diagnosis That Changed Everything
Immunoglobulin deficiency is confirmed, leading to weekly subcutaneous infusions at home
⏱️ [31:00] – A Grey’s Anatomy Ritual & Finding Control
Gabby takes charge of her infusions, watches Grey’s Anatomy, and finds a routine in the chaos
⏱️ [32:00] – Advocating for the Right Medication
Alexis does her own research and fights for biologic treatment to manage Gabby’s symptoms
⏱️ [34:00] – Reflecting on Strength, Resilience & Motherhood
The mental toll of advocating, comforting, and never giving up—and watching her daughter skate through it all
⏱️ [36:00] – TikTok Tips & Empowerment in the Hospital Line
Gabby empowers other kids at the clinic with simple strategies to get through shots and IVs
⏱️ [37:00] – Final Reflections: Curveballs, Advocacy & Support
How Facebook groups, therapy, and the power of asking questions help Alexis keep going
Resources & Links
📌 Follow Gabby’s Skating Journey: @gkapskates on Instagram
📌 Follow Alexis' New Blog: @keep_throwing_curveballs
📲 Learn About the SupportSpot App: SupportSpot on the App Store
Share Your Thoughts!
Was this episode meaningful to you? Have your own rare disease parenting story or insights? We’d love to hear from you! Tag us on Instagram or leave a comment wherever you listen.
🎙️ Subscribe & Review: Help more families find support by subscribing and leaving a review on your favorite podcast app.
🔗 Follow us on Instagram: @childlifeoncall
📩 Contact: Connect with host Katie Taylor and the team behind SupportSpot.
The Child Life On Call Podcast is for informational and educational purposes only. The content shared in each episode, including stories, discussions, and interviews, is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay seeking it because of something you heard on this podcast. The views and opinions expressed by guests on the Child Life On Call Podcast are their own and do not necessarily reflect those of Child Life On Call. Child Life On Call does not endorse any specific medical treatments, procedures, or opinions shared in the podcast. If you or your child are experiencing a medical emergency, call 911 or seek immediate medical attention. By listening to this podcast, you acknowledge that Child Life On Call and its affiliates are not responsible for any decisions made based on the information provided.