Season Two

Kristyn Newbern is a fellow mother and caregiver to her son, Luke. Born with congenital heart defects that required immediate life-sustaining interventions and surgical procedures, they later learned that Luke’s heart defect was just one component of a rare genetic disease called Noonan Syndrome.

 

Kristyn is joined by several guests who have had made a lasting impression on her family throughout their complex medical journey. We learn about the life of a cardiologist, “sci-fi-style” family planning options, the importance of early childhood therapy services, the beautiful evolution of friendships, the power of love, and the strength of a family unit.

 

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Atypical Truth Podcast

Episode Transcription Here
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Welcome to Atypical Truth

Growing up with disabilities and now as a mom of two children with disabilities, I created this podcast to amplify the stories of those within my community - the community of people living with rare diseases, disabilities, and complex medical conditions.

If you would like to join me to share your story and conversations, please don't hesitate to contact me!

Get updates on new episodes!

Meet the Creator & Host

Erica Jolene

Carefully designed and articulated project.

 

Relevant and brave topic. Pushing against the 'tyranny of cheerfulness' is a noble cause.

I commend this project for providing a vulnerable space for people who often aren't allowed vulnerability. Using a podcast and autoethnography as a means of the digital humanities/social sciences is an ambitious prospect and a way to bridge the public, the personal, and the academic.

Margaret Messer Research Grant

a noble cause