227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
Release Date: 08/21/2024
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...
info_outline![How to Talk With Children About Child Abuse [REPOST] (249)- Jane's Story show art](https://assets.libsyn.com/item/35991140?height=50&width=50)
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...
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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...
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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...
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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...
info_outline![Navigating HIE: Hope for Families, and Life Beyond the NICU [REPOST]- Betsy's Story (245) show art](https://assets.libsyn.com/item/35575705?height=50&width=50)
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...
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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...
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243: A Child Life Specialist’s Search for Answers: A Long COVID Diagnosis - Jessica’s Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"If something doesn’t feel right, don’t ignore it. Keep asking questions. You know your child better than anyone."-Jessica Baird, CCLS 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 do you do when doctors keep telling you nothing is wrong—but your child is in pain every single day? For Jessica, a child life specialist and mom, that answer was simple: keep pushing until someone listens. In this powerful conversation, Katie sits...
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242:A Daughter's PCHD19, Autism + Epilepsy Diagnosis: The motivation behind the connected parent-Julie's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"I had to teach myself to advocate – no one should leave a hospital with more trauma than they came with."- Julie Walters 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 episode, Katie speaks with Julie Walters, a mom of two neurodivergent children, entrepreneur, and fierce advocate for inclusion and health equity.Julie shares her deeply personal journey navigating her daughter's epilepsy diagnosis, the challenges of parenting...
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241: How a Kidney Transplant started a mission to help Transplant Families-Cheryl + Kimmy's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“Our goal wasn’t to build something huge overnight – it was to listen to families, fill the gaps, and take that first step.” – Cheryl Whitty 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 heartfelt episode, Katie sits down with mother-daughter duo, Cheryl Witty and Kimmy Witty to hear the inspiring story of how their family journeyed through chronic kidney disease and how a kidney transplant led to the creation of...
info_outline"If you have a doubt about something with your child or a family member, it's just really important to keep pushing through and get to the answers." – Gay Grossman
In this episode, host Katie Taylor speaks with Gay Grossman, a passionate patient advocate and mother, about her journey navigating the rare disease world. Gay shares her experience of seeking a diagnosis for her daughter, advocating for genetic testing, and supporting families through complex medical and educational challenges. Her story highlights the importance of persistence, building a support network, and staying organized. Gay’s insights provide invaluable advice for both child life specialists and parents and caregivers dealing with rare diseases.
Key Insights:
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The significance of early genetic testing in providing crucial information and guiding treatment decisions.
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The importance of building a support network to navigate the medical and educational challenges.
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Staying organized and persistent in the face of numerous medical consultations and uncertainty.
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The emotional and psychological toll of advocating for a child with a rare disease.
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The role of patient advocacy in supporting families and advancing research.
Resources and Tips:
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GeneDx: Genetic testing and counseling services.
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Child Neurology Foundation: Resources for fighting insurance denials and other support.
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Women In Bio and Athena: Support network for women in science and biotechnology.
Connect with Gay on LinkedIn.
When parents feel empowered, everyone wins – kids thrive and the care team excels!
- 85% of users report high satisfaction, appreciating the Child Life On Call App’s comprehensive resources and user-friendly interface.
- 92% of parent users say the Child Life On Call App helped them understand medical procedures and treatment better.
- 80% of parents believe the Child Life On Call App has contributed to better health outcomes for their child.
- 73% of parent users believe the Child Life On Call App has made them feel more empowered to advocate for their child in healthcare
Learn more here.
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.