MERRF Syndrome and Motherhood: Raising and Remembering Dahlia - Jessica’s Story (248)
Release Date: 04/02/2025
Autism, Advocacy and the Power of a Medical ID Bracelet
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Tara Cohen opens up about her son Will’s autism diagnosis and how it transformed her family and career. From navigating meltdowns to discovering AAC as a communication lifeline, Tara shares her honest reflections on parenting, resilience, and hope. What began as a search for a medical ID bracelet led to a career at —where she now helps other families feel safe and supported. This heartfelt episode reminds caregivers that advocacy grows from love and that even small acts of compassion can make a life-changing difference. Timestamps 00:00 – Introduction 03:10 – Early diagnosis...
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When Your Baby is Diagnosed with Type 1 Diabetes: Marlee's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“My baby went from fussy to lifeless in hours—by the time we reached the PICU, they said he might have had six hours to live.” In this episode, TikTok Influencer and Medical Mom , a pediatric speech-language pathologist turned full-time mom, shares the whirlwind diagnosis of her 12-month-old son Bain with Type 1 diabetes and severe DKA, the traumatic hospital stay, and the everyday advocacy that followed. Raw, practical, and deeply hopeful. Why this episode matters Emotional clarity: what a Type 1 diagnosis really feels like in infancy Practical advocacy: scripts, choices, and...
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Brain Surgery for Drug-Resistant Epilepsy: Managing Infantile Spasms
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Join us for an incredibly candid and informative conversation with Audrey Vernick, a passionate advocate and the Director of Patient and Family Advocacy for the Pediatric Epilepsy Surgery Alliance. Audrey shares the powerful 21-year journey of her son, Bennett, who suffered a stroke in utero and was later diagnosed with the catastrophic epilepsy known as Infantile Spasms. Audrey recounts the emotional process from the difficult labor and early concerns dismissed as normal reflexes, to the terrifying moment she saw his MRI and realized half of his brain was black due to a massive stroke. This...
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Speech Therapy at Home: Expert Tips to Help Your Child Communicate
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"The excitement that the kids feel when they are seeing you... and they know today's session with Ms. Luba and they can't wait to see you." - Luba Kaplan When a child enters the medical system, parents often meet many specialists beyond doctors and nurses, including Speech-Language Pathologists (SLP). These professionals are vital members of the healthcare team, doing more than just helping with speech. SLPs, as Luba Kaplan explains, also explains how they look at every area of the child's development to ensure children are being fully supported. In this episode, we introduce Luba Kaplan, a...
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Type 1 Diabetes: Finding Community and Humor After Diagnosis
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
When Stacey’s toddler was diagnosed with Type 1 diabetes, her family’s world turned upside down. In this episode, she shares the early warning signs, the struggle of those first two weeks of injections, and how humor and community turned fear into resilience. Parents will gain hope, advocacy tips, and coping strategies for managing a chronic illness diagnosis. What You’ll Hear How Stacey recognized the 4 Ts of diabetes: Thirsty, Tired, Thinner, Toilet The reality of hospitalization, finger sticks, and injections with a toddler Coping strategies: medical play, humor, and...
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NICU Stay, Down Syndrome, and Infant Loss: A Grief Journey
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book , to share the full, raw story of their daughter, Nadiya. Their journey began with an unexpected connection—a transatlantic online romance between Teejay in Australia and Jon in Canada—that quickly turned into a marriage grounded in a shared life and purpose. With Teejay's extensive background in early childhood development and their experience fostering a young man with Down syndrome, they felt prepared when Nadiya was diagnosed with Trisomy 21 (Down syndrome) early...
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Choosing the Best Children's Hospital: Why Rankings Matter (with Ben Harder)
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Is the "best" hospital just about technology and surgical success? Ben Harder, the journalist who oversees the methodology and data for the U.S. News Best Children's Hospitals Rankings (2025), joins Katie to break down what truly defines quality in pediatric care. Ben shares his deeply personal family story—a tragedy 50 years in the past that drives his commitment to making data-driven information accessible today. This episode is a crucial guide for parents, explaining the three core pillars of the rankings: structure/resources, processes of care, and patient outcomes. We dive into why...
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Heart Transplant for Children: A Mother and Son Face Danon Disease Together
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Psychologist and heart-transplant recipient Dr. Brittany Clayborne shares how her own medical journey prepared her to guide her son Micah through sudden heart failure, an LVAD, and a life-saving transplant. She unpacks the family’s rare Danon’s disease diagnosis, post-transplant cancer (PTLD), and the everyday realities after transplant—meds, setbacks, and hope. You’ll learn Dr. Brittany’s BRAVE framework for hard moments, how rituals sustain connection during long hospital stays, and how Micah turned his experience into action with Transplant Teens and My Brave Journal. This...
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Bone Marrow Transplant for Sickle Cell: One Family's Cure Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this episode of Child Life On Call, guest Maite Rodriguez shares her daughter Alessia’s inspiring journey with sickle cell disease (SCD)—from diagnosis at birth and painful crises to finding a cure through a pediatric bone marrow transplant at Memorial Sloan Kettering. Maite discusses the challenges of long-term treatments like hydroxyurea, the emotional toll of hospitalizations, and her family’s decision to pursue IVF to create a genetic match. She also introduces her bilingual children’s book, , which helps families explain sickle cell to children, siblings, and communities....
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How One Mom Navigated her daughter’s Severe Food Allergies (271)- Susanna's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
From “colic” that never eased to four pages of confirmed allergens, Susanna Peace Lovell recounts the first years of parenting her daughter, Arizona—years marked by nonstop crying, full-body eczema, and relentless advocacy. When a hypoallergenic formula finally brought relief around 18–19 months, Susanna could breathe—and begin reframing motherhood with compassion for her child and herself. She shares practical allergy survival tips (from table toppers to EpiPens), how autism diagnosis informed self-advocacy, and why community through We Are Brave Together mattered. This conversation...
info_outline"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