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

"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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🔗 linkedin.com/in/kfdonovan

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