ADNP Syndrome: A Child Life Specialist's Journey to Diagnosis, Advocacy & Hope

When Caitlin noticed that her daughter, Kennedy, wasn't meeting developmental milestones, she trusted her instincts—even when others reassured her that everything was fine.

As both a former Child Life Specialist and mom of a child with ADNP syndrome, Caitlin shares her family's journey from early concerns and endless appointments to receiving a diagnosis for a condition so rare that only about 500 cases have been identified worldwide.

In this conversation, Caitlin opens up about navigating uncertainty, advocating for her daughter in healthcare settings, finding support through rare disease communities, and balancing the joy and grief that often coexist when parenting a child with complex medical needs.

Whether you're a parent searching for answers, raising a child with a diagnosis, or supporting families through difficult seasons, Caitlin's story is filled with practical wisdom, encouragement, and hope.

In this episode, you'll learn:

• How to trust your instincts when something feels different about your child's development

• What it was like receiving a rare disease diagnosis

• Why finding the right medical providers matters

• How parents can confidently advocate for their children during medical procedures

• The importance of community for rare disease families

• How Caitlin and her husband navigate the emotional challenges of parenting together

• Why joy and grief can exist at the same time