The story of Sandra
Our daughter, Sydney, was diagnosed with Alternating Hemiplegia of Childhood. She is currently the youngest diagnosed in the world. Alternating Hemiplegia of Childhood (AHC) affects 1 in one million kids, making it an ultra-rare disease. It is defined as attacks of paralysis in one or more extremities and also include uncontrollable eye movements, dystonia, low muscle tones, developmental and cognitive delays, seizures, GI issues and more. Sydney is globally delayed but is fighting everyday to get stronger. Thankfully, the AHC community was able to connnect with scientists and are working with researchers to find the cure! We hope to bring awareness to this rare disorder through this community.