Caregiver Stories Episodes

Melanie, mom to 12-year-old Masen, shares the unexpected path to her son's diagnosis with Homocystinuria (HCU) after a routine eye exam revealed something "off." What followed was months of uncertainty, a rare diagnosis few providers had even heard of, a crash course in low-protein diets and metabolic formulas, and two back-to-back eye surgeries to prevent further damage. With gentleness, honesty, and deep advocacy, Melanie describes how they adjusted as a family, how Masen built resilience, and...

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 Lauren's Hope—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 compassio...

"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 Marlee Brandon, 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 cla...

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 st...

In this incredibly personal and moving episode, we sit down with Teejay and Jon, the authors of the gentle children's book Clemence, 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...

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 ...

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 bo...

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 ...

When Camryn's fearless 4-year-old suddenly became anxious, her gut said something deeper was wrong. Multiple "all clear" evaluations followed—until a post-virus crash at age 6 that led to a diagnosis under the PANS/PANDAS umbrella (autoimmune encephalitis). Camryn shares how a steadfast pediatrician, early referrals, and balancing clinical guidance with peer support helped her daughter reclaim everyday life—right down to summer swim league. She also opens up about protecting her child's privacy,...

In this reposted episode, Courtney shares her journey of receiving her daughter Annie's Trisomy 21 diagnosis, navigating the NICU, and walking through open-heart surgery complicated by pulmonary hypertension. She talks about the power of community, the unexpected strength she discovered in herself, and how vulnerability and advocacy have shaped her motherhood. Courtney reminds us that love, connection, and collective wisdom can carry families through the hardest seasons while celebrating Annie's...

Tuberous Sclerosis Complex, epilepsy in children, and autism parenting—in this powerful episode, women's health coach and mom of four, Erin Trier, shares her family's eight-year journey to finally receiving a TSC diagnosis for her son, Brendan. She talks about the early seizures, navigating a rare genetic disorder, and managing the added challenges of autism and uncontrolled epilepsy. Erin opens up about the emotional and mental toll, the power of vulnerability, and the practical organization s...

Victoria Garcia—lovingly known as "Nurse Vic"—shares her powerful journey as a nurse and mom of two, including her daughter Julia, who was diagnosed with achondroplasia during pregnancy. In this heartfelt episode, Victoria opens up about the emotional and logistical challenges of navigating a rare diagnosis while working at the very hospital where she received the news. She talks about the strength she found in community, the importance of informed advocacy, and what it truly means to be in alig...

In this moving and hope-filled episode, mother-daughter duo Quinn Wyatt and Kirby Larson share the deeply personal story behind their middle grade novel, Gut Reaction. Diagnosed with Crohn's disease as a teen after years of being dismissed, Quinn opens up about her experience living with a misunderstood chronic illness. Kirby, an acclaimed author, reveals what it took to revisit this painful chapter of their lives and co-write a book that helps kids feel seen. Together, they explore diagnosis de...

"What started as a terrifying diagnosis became a mission to help other families feel seen, supported, and brave." – Kate, founder of Brave Bears Club In this reposted and newly updated episode, we revisit Kate's emotional and empowering story as she shares her daughter Charlotte's unexpected diagnosis of infantile spasms (IS) at 22 months old. What began as a terrifying medical journey transformed into an advocacy movement—Brave Bears Club—that now supports children with pediatric epilepsy arou...

"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 ...

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...

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 pare...

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 their website 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...

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 fath...

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. Wh...

"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 t...

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 Blended Tube Feeding, 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 ...

📢 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 non...

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...