“I feel like I owe it to him to explore other avenues. Acceptance doesn’t mean giving up; it means continuing to learn and adapt.”- Lexi

In this episode of Child Life On Call, Katie Taylor speaks with Lexi, a devoted mother of two, about her family’s journey with alopecia universalis. Lexi shares the emotional challenges and triumphs of supporting her three-year-old son, Penn, who was diagnosed with this rare condition. Through sharing her story, Lexi highlights the power of parental instincts, blending Western and Eastern medicine, and advocating for her child’s unique needs. Her story offers valuable insights for parents and professionals alike, emphasizing the power of resilience and community in pediatric healthcare.

Key Insights:

Early Diagnosis and Gut Instincts: Lexi’s intuition played a crucial role in identifying her son’s alopecia early on, showcasing the importance of parental instincts, and advocating for them, in healthcare.

Navigating Emotional Challenges: Lexi discusses the emotional impact of her son’s diagnosis and how her husband’s positive outlook has been a source of strength for their family.

Advocacy and Medical Care: The necessity of finding specialized dermatologists and the integration of Western and Eastern medical practices are highlighted as key components of Penn’s care.

Coping with Public Reactions: Lexi shares strategies for handling public reactions and educating others about alopecia, aiming to foster empathy and understanding.

Community and Support Systems: The episode underscores the value of support systems, both within the family and from the wider community, in navigating a rare medical condition.

Resources and Tips:

National Alopecia Areata Foundation: Connect with support groups, explore treatment options, and find resources tailored for alopecia families. 

https://www.naaf.org/youth-mentor-program/: Support group pairing kids with mentors that Lexi mentioned.

When parents feel empowered, everyone wins – kids thrive and the care team excels!

Get the SupportSpot app! Now available for ALL parents without a hospital code!

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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