The DHX30 Community
DHX30 Syndrome is ultra-rare, but our community is real. These are our loved ones living with DHX30 around the world — each with their own story, their own personality, and their own family rooting for them.
We believe everyone with a DHX30 mutation deserves to be seen, celebrated, and supported. This is a space to honor our community, so the broader world can see the human beings behind this diagnosis.
Add Your DHX30 Story
If you’d like to highlight your or a loved one’s story, we’d love to have you. Please reach out to us to start your page.
Amaya
Amaya was diagnosed with DHX30 at nine and a half, after years without answers. She is non-verbal and cannot walk, but communicates her personality loud and clear through her eyes and expressions. A music-lover, world traveller, and sassy soul with attitude, Amaya is 10 years old and has a younger sister who is 8.
Julie
If you have ever met Julie, you certainly remember her sweet smile and contagious laughter. She is a loving girl who is the absolute center of her mom and dad's world, and she is always happiest when joining the family on the next adventure. The family wouldn't be complete without her.