219: 60 Years Later: Reflecting on a Daughter with Ichthyosis

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.

Learn 6 Positions to Help Kids Feel Comfortable and Safe

Here are some of our favorite affiliates that help promote positive coping for kids:

10% off Coping Kits and other select merchandise at Present Over Perfect

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.




You Might Also Like…

223: [6 minutes] The Child Life On Call App is Now SupportSpot!

Episode Description: In this special impromptu episode, Katie Taylor, Certified Child Life Specialist and CEO of Child Life On Call, shares some exciting news! We're rebranding our beloved Child Life On Call app to SupportSpot. Tune in to hear why we made this change...

222: Ask a NICU Mama with Ashley O’Neil

In this episode host Katie Taylor sits down with Ashley O’Neil, a family nurse practitioner and a NICU mom. Ashley shares her journey when her son, Colin, was born at 25 weeks gestation and the following 183 day NICU stay.  Listen to hear how she balanced work,...

Comfort positions

Download the Comfort Positioning Guide



Being close to a trusted adult is powerful. It lessens pain and brings comfort when kids need it most. This guide shows you how to keep kids safe, and help them feel supported, during medical procedures. From the Meg Foundation for Pain and Child Life On Call.

Your download is heading to your inbox now!

Pin It on Pinterest

Share This