Libsyn Directory

MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

Release Date: 04/02/2025

Prader-Willi Syndrome, Motherhood & Finding Community Through Advocacy [REPOST] (253)- Jessica's Story

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

📢 This is a special repost of one of our most heartfelt and insightful episodes. Whether this is your first time hearing Jessica’s story or a revisit, her perspective as a mom of a child with Prader-Willi Syndrome will stick with you. This month is also Prader- Willi Syndrome awareness month. What happens when a diagnosis changes everything you expected about motherhood? For Jessica Patay, it sparked a journey through fear, resilience, advocacy, and ultimately, the founding of an incredible nonprofit called We Are Brave Together. In this deeply moving episode, Jessica opens up about:...

Two Sisters with Cystic Fibrosis - Laura's Story (252)

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

What would you do if both of your children were diagnosed with a life-threatening genetic disease—and there was no support system in place for parents like you? In this inspiring episode, Katie interviews Laura Bonnell, a former Detroit news reporter turned full-time advocate and nonprofit founder. After both of her daughters were diagnosed with cystic fibrosis (CF), Laura transformed her grief and determination into the Bonnell Foundation, providing real-time support to families across the U.S. who are navigating life with CF. In this powerful episode, we explore: ✅ How Laura pushed for...

A Nurse Practitioner’s Story of Grief, Strength & Advocacy [REPOST] (251)- Ashley's Story

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

📢 This is a special repost of one of our most impactful and heartfelt episodes. Whether you’re hearing Ashley O’Neill’s story for the first time or revisiting it, her journey continues to resonate deeply with NICU families, pediatric providers, and anyone who has faced unimaginable loss and found strength in the aftermath. What happens when your personal and professional worlds collide in the NICU? For family nurse practitioner Ashley O’Neill, the journey into motherhood brought profound loss, relentless medical advocacy, and ultimately, a passion for helping others. Ashley’s...

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

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

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...

How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

Knowing how to talk to kids about child abuse can feel overwhelming—but it doesn’t have to be. In this impactful episode of Child Life On Call, host Katie Taylor interviews child abuse prevention advocate Jane Donovan—who also happens to be her mom. Jane shares her personal journey, sparked by a tragic event, that led to a decades-long mission to protect children and educate communities. From creating a long-running puppet program for abuse prevention to empowering kids with body safety tools, this conversation is full of actionable advice for parents, caregivers, educators, and child...

MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

"We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy. In this honest and deeply moving episode, we explore: ✅ What it’s like to go on a diagnostic odyssey, and finally get answers that bring more questions ✅ The complexity of parenting a child...

A Cerebral Palsy Diagnosis: Traumatic Birth, Micropreemie Twins & the Power of Hope {REPOST}- Savannah’s Story (247)

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

“It wasn't any kind of strength within myself that helped me get through the NICU. It was the strength they had—they gave it to me.”- Savannah O'Malley 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 What happens when your birth plan is shattered in an instant? For Savannah, the unexpected arrival of her micropreemie twins at just 24 weeks turned her world upside down. One of her sons faced significant medical challenges, including...

Pyroxd1 and the Path Forward: A Rare Disease, a Life-Saving Lesson & a Mission to Help Others- Maria + Matt's Story (246)

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

"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 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...

Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245)

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

"I remember sitting in the NICU thinking, ‘Am I going to lose my baby? Is this the best outcome for him? What will his life look like?’ And then I realized—I wasn’t alone in these thoughts. Other parents had been here before, and they found a way forward. That’s when I knew we needed a community like Hope for HIE." — Betsy Pilon, Founder Hope for HIE 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 What happens when your...

A Mother and a Physician: Navigating Her Daughter’s NMOSD Diagnosis – Maggie’s Story (244)

Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support

"I thought my job was to save my daughter, but I realized my job was to show her how to live with strength and resilience." – Dr. Maggie Kang 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 In this powerful episode, Dr. Maggie Kang shares her deeply personal journey as a physician and a mother navigating her daughter’s rare disease diagnosis, Neuromyelitis Optica Spectrum Disorder (NMOSD). She discusses the emotional and medical...

More Episodes

"We followed Dahlia’s lead—and Dahlia was not going to let this stop her.” — Jessica Fein

What happens when your child’s diagnosis is so rare that no one—including your doctors—knows how to help? For Jessica Fein, navigating life with her daughter Dahlia’s MERRF Syndrome meant redefining motherhood, finding joy in unexpected places, and transforming grief into connection and advocacy.

In this honest and deeply moving episode, we explore:

✅ What it’s like to go on a diagnostic odyssey, and finally get answers that bring more questions

✅ The complexity of parenting a child with medical needs, including the realities of home care and hospital stays

✅ How grief exists even while your child is alive—and what ambiguous grief means for medical parents

✅ The power of storytelling, finding meaning through writing, and connecting with community through shared experience

Whether you’re a parent, provider, or someone looking to better understand the emotional layers of complex care and rare disease, this episode will resonate with you.

Timestamps & Key Topics

⏱️ [00:00] – Episode Intro
Meet Jessica Fein and hear the quote that shaped this conversation

⏱️ [01:00] – Jessica’s Story Begins
Navigating the early years of parenting without answers

⏱️ [03:00] – Diagnosis & the Unknown
The journey to a MERRF Syndrome diagnosis and what came next

⏱️ [09:00] – Life With a Rare Disease
Hospital stays, trachs, and becoming the expert in your child’s care

⏱️ [13:00] – Following Dahlia’s Lead
Letting joy and silliness guide the way

⏱️ [17:00] – Who Dahlia Was
A peek into Dahlia’s personality and how she impacted everyone she met

⏱️ [20:00] – Writing As Healing
How Jessica turned to writing as an act of reflection, advocacy, and self-care

⏱️ [24:00] – What Helps in the Hospital
Tangible ways friends and providers can support caregivers

⏱️ [30:00] – Grief, Then and Now
Understanding ambiguous grief—and the evolution of loss after death

⏱️ [33:00] – How to Connect With Jessica
Where to find her book, podcast, and writing

Resources & Links from today's episode:

📕 Read Breathtaking by Jessica Fein: [Available on Amazon and wherever books are sold]
🌐 Visit Jessica’s website: www.jessicafeinstories.com
🎧 Listen to her podcast: I Don’t Know How You Do It
📷 Follow Jessica Fein on Instagram, Facebook and LinkedIn

Share Your Thoughts
Did this episode resonate with you? Do you have a story of parenting through rare disease or complex medical care? We’d love to hear from you—tag us or leave a comment! If you found this episode meaningful, please subscribe and leave a review—it helps more families discover these conversations.

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🎙️ Meet the Host
Katie Taylor is the co-founder and CEO of Child Life On Call, a digital platform connecting families and care teams with expert child life services. A certified child life specialist for over 13 years, Katie has worked across pediatric healthcare settings, presented nationally, and is the author of a children’s book. She hosts the Child Life On Call Podcast to amplify parent voices and emphasize the value of child life services.

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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.

Keywords: MERRF Syndrome, Rare Disease, Medical Parenting, Grief, Child Life

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