227: Searching for a Diagnosis: A Rare Disease Mom and Advocate's Journey - ADCY5 Gay's Story
Release Date: 08/21/2024
![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...
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240: How to Stay Calm During Medical Procedures
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
In this episode of Child Life On Call, host Katie Taylor, a certified child life specialist, shares personal experiences and practical advice on maintaining calm during your child's medical procedures. Katie recounts a traumatic incident with her daughter, emphasizing the natural parental panic response and how to manage it. She offers three key strategies: getting informed about medical procedures, finding a supportive role during the process, and taking care of your own physical and emotional needs. Katie introduces the Support Spot app as a valuable resource, providing step-by-step guides...
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239: Finding Grants Brought Hope - Abby's Story: A son's near drowning accident
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
“Hope doesn’t take away the darkness, but it shines some light in it.”- Abby Zachritz 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 first episode of the year, Katie sits down with Abby Zachritz—better known as Advocacy Abby—who shares her journey from personal tragedy to becoming a beacon of hope for families in need. Abby recounts the near-drowning accident that changed her son Wyatt’s life and how her...
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238: Parents: How to Make the Most out of Rounds in the Hospital
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
Navigating Medical Rounds: Tips for Parents from a Child Life Specialist In this episode, Katie Taylor, a certified child life specialist, offers critical insights and tips for parents navigating medical rounds with their hospitalized children. She introduces Q Rounds, a new tool developed by Dr. Mike aimed at making rounds more predictable and accessible for families. Katie explains the purpose and structure of rounds, highlighting the importance of family-centered rounds. She provides strategies for effective communication with the healthcare team, including preparing...
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237: Holding Space for Hope : The Final Episode of 2024
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"Hope isn't about avoiding the hard truths. It's about staying grounded in them and still believing that something good is possible."- Katie Taylor In this final episode of 2024, Katie dives deep into the meaning of hope, exploring its role in navigating challenges for parents, children and Child Life Specialists. Reflecting on personal experiences and heartfelt conversations with families, this episode unpacks how hope isn’t blind optimism but a source of strength that coexists with pain and uncertainty. With stories, reflections, and an invitation to carry hope into the new year,...
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236: The Mix of Joy & Grief through Medical Parenting (autism, lissencephaly and lennox gastaut syndrome) – Joanne's Story
Child Life On Call | Medical, Parenting, Healthcare, Grief, Trauma, Pediatrics, Coping Skills, Community & Support
"Life is always in the mix of joy and grief, and those things coexist. But this is how I’m going to deal with it." - Joanne De Simone In this episode of the Child Life On Call Podcast, Joanne De Simone shares her journey as a parent raising two sons with disabilities. From navigating her eldest son Benjamin’s rare brain malformation, lissencephaly and complex medical needs to supporting her younger son Sebastian, who is on the autism spectrum. Joanne discusses the challenges, victories, and personal growth she’s experienced. As a mother and special education teacher, and now an...
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.