Welcome to Gia’s Journey

Gia is a bright, loving little girl with a big personality, a love for animals, and a smile that brings joy to everyone around her.

Recently, Gia and her family received a diagnosis that changed their world: ROHHAD, an extremely rare and serious condition affecting fewer than 200 children worldwide. ROHHAD impacts the body's automatic systems, including breathing, hormones and heart rate, and it requires close medical care for life.

Gia's Journey was created to share her story, help friends and family understand ROHHAD, raise awareness for this little-known disease, and support the research that may one day lead to better treatments and a cure.

There are still many unknowns ahead, and some hard days along with them. But Gia won't face any of it alone. She has a community of family, friends, doctors, researchers and supporters standing beside her every step of the way.

This is a place to follow Gia's journey, celebrate her victories, learn about ROHHAD, and discover ways to support Gia and other children facing this incredibly rare condition.

Thank you for being part of Gia's Journey.