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....
219: 60 Years Later: Reflecting on a Daughter with Ichthyosis
Podcast Show Notes
“We, we weren’t letting those people push us around because, believe it or not, living with us 24 hours a day, we knew more than some of the doctors.” – Skip Vilas
In this heartfelt episode of the Child Life On Call podcast, host and CCLS Katie Taylor interviews Deb Vilas, an expert child life specialist, alongside her parents, Skip and Joyce Vilas. They share their story spanning over 60 years, recounting the challenges and triumphs of raising Deb, who was born with ichthyosis, a rare skin condition. The episode dives deep into the emotional and medical journey of Deb’s early years, the evolution of parental advocacy, and the power of family and community support in navigating the complexities of pediatric healthcare.
Takeaways from Skip and Joyce:
The Power of Advocacy: Joyce and Skip’s relentless advocacy for Deb’s health and well-being, challenging medical professionals when necessary.
Importance of Parental Presence: The emotional and developmental impact of parental presence and touch, even in limited hospital circumstances.
Resilience and Adaptation: Deb’s strength and resilience in the face of social challenges and medical hurdles.
Evolution of Pediatric Care: A reflection on how pediatric care has evolved, highlighting the necessity of family-centered approaches.
“The advocacy role is important. And of course, that’s one of the roles that Child Life has for children.” – Skip Vilas
Recommended Resources
Foundation for Ichthyosis and Related Skin Types (FIRST): Provides support and resources for families dealing with ichthyosis. Learn more
National Conferences by FIRST: Opportunities for families to connect and share experiences.
Whether you’re a parent, healthcare professional, or simply interested in learning more about child life, this podcast is for you.
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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.
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