Growing Up with MED13L: Life at 11 (with Anna Fracalossi)
Welcome back to The Voices of MED13L, the official podcast of the MED13L Foundation. I’m Inon Shampanier—dad to a child with MED13L and your host for today’s episode, as we continue our Growing Up with MED13L series, where families share what daily life looks like at different ages and stages.
In this episode, we’re joined by MED13L parent Anna Fracalossi, mom to Alisa (11). Anna shares their long diagnostic journey—first noticing developmental delays around six months, moving from Brazil to the United States, navigating years of therapies and specialist visits, and finally receiving an MED13L diagnosis through exome sequencing when Alisa was seven.
Anna then brings us into Alisa’s life today at age 11: her routines, therapies, and the joys she’s found through movement and community—swimming, tennis, and Miracle League baseball. We also talk candidly about behavioral rigidity, emotional regulation, and how ABA has helped Alisa build tools to communicate feelings, shorten the intensity of tantrums, and navigate frustration.
A highlight of the conversation is Alisa’s transition to middle school, where she participates in a more inclusive academic setting alongside typically developing peers—with thoughtful supports in place. Anna shares what that transition has looked like socially and academically, and why peer role models have mattered so much for Alisa’s growth and independence.
This episode is also filled with hope: Anna reflects on Alisa’s steady progress in communication (from no words to full sentences), her love of the arts—music, ballet, opera, and visual art—and the new developmental milestones of preteen life: growing independence, shifting interests, and emerging self-advocacy.
Above all, Anna offers a powerful message to families who are new to MED13L: be gentle with yourself, allow space for grief and change, and trust that over time you can rebuild expectations into something grounded in joy, connection
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 ...
