60 Years Later: Reflecting on a Daughter with Ichthyosis

Child Life On Call

“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

Podcast Show Notes

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

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Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officals endorse any treatments listed here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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