In this episode of Voices of MED13L, we begin our series Growing Up with MED13L with a powerful, in-depth look at the teenage years. Host Vanessa Dias is joined by fellow MED13L parent Michelle Seaver, who shares what life looks like for her 16-year-old daughter today — from communication and learning to socialization, independence, and daily routines.
Many families wonder what adolescence might hold for their child with MED13L. Michelle offers an honest and hopeful look at the realities of life at 16:
This conversation is grounded, encouraging, and deeply relatable for any family thinking about the road ahead. Michelle also shares insights on therapies, life skills, reading development, and the importance of community — along with a glimpse into future possibilities through programs like Riverview and beyond.
Growing Up with MED13L: Life at 16 is part of our ongoing series highlighting lived experiences across childhood and adolescence. For newly diagnosed families or anyone wondering what the future may look like, this episode offers reassurance, perspective, and real stories of growth.
Resources
Be Counted in the 2025 Census: med13l.org/research-hub/join-med13l-research-opportunities/med13l-registry-enrollment
Community Checklist: Google Drive Link
CRID: thecrid.org
Citizen Health: citizen.health/partners/med13l-foundation
Simons Searchlight: https://research.simonssearchlight.org/account/create
Rare-X: rare-x.org/med13l
Website: med13l.org
Facebook: facebook.com/med13lfoundation
Instagram: instagram.com/med13lfoundation
YouTube: youtube.com/@med13lfoundation/videos
Glossary: med13l.org/knowledge-base/glossary
Music Credit:
Intro and outro music for the Voices of MED13L Foundation podcast was composed and performed by Sophie Seaver, sibling ...
