A Rare Diagnosis Journey: Collagenous Gastritis and IGG deficiency (250)- Alexis' Story

What 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.

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📩 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.