Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246)
Release Date: 03/19/2025
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: ...
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Navigating Childhood Loss Through Storytelling (259)-B.R.'s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
This episode is dedicated to Katie’s dear friend Joe, who recently passed away, leaving behind his wife and two young sons. Joe’s story reminds us to live in alignment with our purpose and to cherish the people we love. In this heartfelt episode of the Child Life On Call podcast, Katie Taylor speaks with B.R. Duray, an author, filmmaker, and storyteller whose debut children's book, The Mood Swing, is rooted in his experience of losing his father at the age of 10. With it being Father’s Day this past weekend, this conversation takes on even deeper meaning. B.R. shares how grief has shaped...
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How a Nurse Practitioner Faced Her Daughter’s Tetralogy of Fallot Diagnosis (258)- Sarah's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
We’d like to extend our sincere thanks to our episode sponsor, reStickity®. Their innovative, mess-free reusable sticker sets allow families to personalize hospital spaces with familiar photos and comforting images, helping bring a sense of home to the hospital. To learn more, visit and use code CLOC10 for an exclusive discount available to our listeners. In this inspiring episode, we meet Sarah Michelle Boes—nurse practitioner, entrepreneur, and mom to Meadow, who was diagnosed in utero with Tetralogy of Fallot and multiple congenital heart defects. Sarah brings a powerful trifecta...
info_outline![The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story show art](https://assets.libsyn.com/item/36833885?height=50&width=50)
The NICU Dad Experience: A father’s view from the NICU [REPOST] (257)-Alex’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
What happens when your world changes with a single phone call? In this powerful reposted episode, NICU dad and advocate Alex Zavala shares his emotional journey of fatherhood after his daughter was born at just 27 weeks. From the emergency C-section and NICU stay to the emotional toll of the "NICU dad shuffle," Alex opens up about the lesser-heard experience of dads navigating medical trauma, guilt, and resilience. As the host of the NICU Dad Podcast, Alex continues to amplify the voices of fathers facing similar experiences. This conversation is an essential listen for NICU families and...
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Helping Kids Swallow Pills:Tips and tricks for Parents from a Child Life Specialist (256)-Adina's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Learning to swallow pills can be a major milestone—and a big challenge—for many kids. In this episode, certified child life specialist Adina Levitan joins host Katie Taylor to break down the myths, fears, and best practices behind teaching children how to confidently swallow pills. From her clinical expertise to creative solutions like affirmations, games, and candy "pill" practice, Adina walks us through her unique approach to supporting kids and parents through this skill-building process. Whether you're a caregiver, clinician, or a parent trying to help your child at home, this episode...
info_outline![A Microtia Atresia Diagnosis: Hearing Aids, Surgery and a Journey of Hope [REPOST] - Kim's Story(255) show art](https://assets.libsyn.com/item/36580225?height=50&width=50)
A Microtia Atresia Diagnosis: Hearing Aids, Surgery and a Journey of Hope [REPOST] - Kim's Story(255)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“You make the best decision for yourself and your family—and you stick with it.”- Kim Pena What happens when you’re handed unexpected news at your child’s birth—and there’s no clear roadmap ahead? In this reposted episode, educator and mom Kim Pena shares her powerful journey as the parent of a child born with Microtia Atresia, a rare congenital condition affecting the ear. Kim was one of Katie’s very first guests on the Child Life On Call podcast, and her story is still a listener favorite to this day. In this repost, Katie kicks off the episode by giving us a quick...
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Blended Tube Feeding for G-tube fed Kids & Adults: How a dietician empowers families through food - Hilarie’s Story (254)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
What if blending real food could transform your child’s tube feeding experience—and your entire family’s daily routine? In this inspiring episode, registered dietitian and new mom Hilarie shares how her career in pediatric nutrition led her to create , a platform and supportive community designed to help families explore real food options for children with feeding tubes. Hilarie and Katie have an insightful conversation about doing what works best for your family and how it is not an all-or-nothing approach when it comes to tube feeding. From clinical frustrations to practical...
info_outline"What we realized was that rare isn’t as rare as we think—there are so many of us out here searching for answers, fighting for our kids, and trying to make a difference."- Maria Granados
We extend our sincere gratitude to our sponsor for this episode, Gebauer PainEase®. We are pleased to provide more information about this product, and we invite you to learn more by visiting their website.
What if a simple miscommunication in the hospital could have cost your child their life? For Maria and Matt Granados, parents of a daughter with Pyroxd1, that terrifying moment led to a groundbreaking realization—and a mission to help other families facing rare diseases.
In this powerful episode, we dive into:
✅ The challenges of diagnosing and living with Pyroxd1, a rare neuromuscular condition
✅ A near-fatal hospital mistake that could have changed everything
✅ How they turned their personal struggles into Take Part Foundation, a nonprofit funding rare disease research
✅ The power of storytelling, advocacy, and community for families navigating the unknown
Maria and Matt’s story is one of resilience, innovation, and advocacy, proving that "rare is more common than you think." Whether you’re a rare disease parent, medical professional, or someone looking for inspiration, this episode is a must-listen.
Timestamps & Key Topics
⏱️ [00:00] – Episode Intro
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Welcome to today’s episode featuring Maria & Matt Granados
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Why raising awareness for Pyroxd1 is so important
⏱️ [01:00] – Meet Maria & Matt
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Their family’s journey: married 9 years, three kids, and an entrepreneurial spirit
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How flexibility in work became essential for parenting a child with complex medical needs
⏱️ [03:00] – The Start of Their Rare Disease Journey
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Pregnancy and early signs something was different with Natalie
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The challenges of getting doctors to take concerns seriously
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Being told “don’t worry” for a year—while their instincts said otherwise
⏱️ [09:00] – The Thanksgiving Hospital Crisis That Changed Everything
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Natalie’s sudden health decline and emergency hospitalization
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The shocking realization that hospitals don’t share medical records effectively
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How a simple website they built saved Natalie’s life by preventing a life-threatening medication error
⏱️ [13:00] – Turning Their Experience Into a Mission
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How their frustration with the system led them to found Take Part Foundation
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Why families need access to their child’s full medical history
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The power of self-advocacy in rare disease care
⏱️ [24:00] – What Is Pyroxd1? Understanding This Rare Condition
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A breakdown of what Pyroxd1 is and how it affects the body
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The difficulty of finding a diagnosis and why many families go undiagnosed
⏱️ [30:00] – The Reality of Rare Disease Research & “Death Valley” Funding
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The shocking truth: 95% of rare diseases have no FDA-approved treatment
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Why promising research often stalls due to lack of funding
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How Take Part Foundation provides grants to researchers in need
⏱️ [38:00] – How Take Part Helps Families Get Genetic Testing
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Many families can’t afford genetic testing—so Take Part is filling the gap
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The impact of a diagnosis on getting insurance coverage for therapies and equipment
⏱️ [44:00] – Strengthening Their Marriage Through the Rare Disease Journey
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The emotional toll of raising a medically complex child
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The mindset shift that saved their marriage: “If Natalie’s not offended, I don’t need to be offended.”
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The importance of seeing doctors as humans, too
⏱️ [50:00] – Let Your Fight Shine: A Message for Other Rare Parents
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Maria’s beautiful perspective on embracing the fight instead of hiding it
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Why advocacy is the most powerful tool rare disease parents have
⏱️ [52:00] – Where to Find Maria & Matt + How to Support Take Part Foundation
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How to get involved, donate, or apply for support
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Why storytelling is a crucial part of the rare disease journey
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Final words of encouragement for other families
Resources & Links
📌 Learn More About Pyroxd1 & Take Part Foundation: www.take-part.org
📥 Apply for Genetic Testing Support: Take Part Foundation Resources (Coming Soon!)
📲 Follow Take Part on Instagram: @TakePartFoundation
🎧 Listen to more episodes: Child Life On Call
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📩 Contact us: Lyndsey Fedorko
🎙️Meet the host: Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform designed to provide parents, kids, and the care team with access to child life services tools and resources. She is a certified child life specialist with over 13 years of experience working in various pediatric healthcare settings. Katie is the author of the children's book, and has presented on the topics of child life and entrepreneurship, psychosocial care in the hospital, and supporting caregivers in the NICU setting both nationally and internationally. She is also the host of the Child Life On Call Podcast which features interviews with parents discussing their experiences throughout their child's medical journey. The podcast emphasizes the crucial role of child life services in enabling caregivers both at and beyond the bedside.
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.