August 26, 2021

Siblings Rylee, Jake, and Luke Grandia have been diagnosed with tuberous sclerosis complex (TSC), but are each uniquely affected.

Rylee received her TSC diagnosis at 18-months old. Over the years, she gained seizure control through medication and learned to manage her ADHD, allowing her to successfully graduate from high school.

Her brother Jake was diagnosed at 11 months, and has battled seizures, behavioral manifestations, and autism.

Luke, who was diagnosed with TSC prior to birth, is the most medically impacted. At a young age, he averaged 80-90 seizures per day in addition to tumors on his heart and liver. Luke experiences cognitive delays as a result of his seizures.

The siblings, alongside their parents Shannon and Rob–who has also been diagnosed with TSC–work with the TS Alliance to educate and advance treatment options for those living with TSC. Shannon hopes more universal treatments will be developed to support patients from diagnosis through adult life as the world continues to understand TSC.