DNM1 Families Around the World
Real families, real stories. Follow the journeys of children and parents living with DNM1 epilepsy across the globe, catch up on press coverage, listen to their voices, and support a family-run shop that gives back.
Follow DNM1 families on social media.
Families around the world share their day-to-day journey with DNM1 — the hard days and the joyful ones. Follow along, like, and comment to let them know our community is behind them.
Wilson the Warrior — USA
Follow Wilson's journey and the family behind Love, Wilson — an adaptive clothing shop built to support medically complex kids like him.
Read His Story →
Uriel — Spain
Uriel's family founded De la Mutación a la Vida, a nonprofit sharing his journey with DNM1 and supporting the rare disease community in Spain.
Visit Their Website →
Ciro — Argentina
Follow Ciro's family as they raise awareness for DNM1 epilepsy and connect with the growing Latin American rare disease community.
View on Instagram →Luka — Poland
Luka's family shares updates on his journey with DNM1-related epilepsy and connects with Poland's small but determined DNM1 community.
Read His Story →DNM1 Slovakia
A dedicated community site sharing DNM1 information and family stories for Slovak-speaking families navigating a new diagnosis.
Visit DNM1.sk →Wyatt — Epilepsy Foundation
The Epilepsy Foundation shares Wyatt's story living with DNM1-related epilepsy, helping raise awareness for families like his.
View on Instagram →DNM1 families making headlines.
Press coverage, fundraisers, and features that help raise awareness for DNM1 epilepsy beyond social media.
Beorn's Story
Stephanie Rankin and her son Beorn are featured in "The Power of Precision Medicine, Personalized Care & A Brave Kid" — a look at what individualized care can mean for a DNM1 family.
Read the Story →Luka's Diagnosis — Poland
Polish outlet Zdrowie naTemat covers 14-month-old Luka's diagnosis with a rare, drug-resistant form of epilepsy — one of only five known cases in Poland.
Read the Article →Get Colby a Trexo — Ontario
A successful community fundraiser led by Morgan Ptolemy helped get Colby, a child with DNM1 epilepsy in Ontario, a Trexo robotic gait trainer.
See the Fundraiser →Hear a DNM1 family's story.
"Unraveling the Puzzle: Navigating Life with DNM-1 Gene Mutation" is a candid conversation about diagnosis, daily life, and hope — from a parent who has lived it.
Listen to the Episode →Unraveling the Puzzle
Navigating Life with DNM-1 Gene Mutation
Love, Wilson — support their journey.
Love, Wilson is a small, family-run shop making made-to-order, adaptive, G-tube accessible clothing — started by Wilson's own family. Every order supports them directly.
Know a DNM1 family we should feature?
If your family would like to be added to this page, or you know a story we should share, we'd love to hear from you.