Growing Up With MED13L: Life at Age 12
In this episode of The Voices of MED13L, we launch our new Growing Up With MED13L series with a powerful and honest conversation titled “Life at 12.” Host Vanessa is joined by fellow MED13L parent Katie Johnston, mom to Addie, a bright, confident 12-year-old living with MED13L syndrome.
Katie shares Addie’s journey to diagnosis at age nine and reflects on what life looks like today—academically, socially, emotionally, and at home. From navigating special education services and IEP advocacy, to communication challenges, puberty, independence, friendships, and sibling dynamics, this episode offers a real-world look at the joys and complexities of raising a preteen with MED13L.
Listeners will hear how receiving a diagnosis brought clarity, community, and renewed strength for advocacy, as well as practical insights on therapies, AAC use, school placement, routines, and fostering independence. Katie also speaks candidly about acceptance, hope, and what she envisions for Addie’s future.
This episode is especially meaningful for families wondering what the MED13L journey can look like beyond early childhood—and a reminder that while every child’s path is different, none of us walk it alone.
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 ...
