Life Sciences Expansion: Critical for Families & the Economy

Two years ago, Mary and Jay McDirmid were happily anticipating a new baby to join their two-year-old daughter, Charlie.

Then came a shock.

Their baby was diagnosed in utero with Tuberous Sclerosis Complex (TSC), a rare genetic disorder that causes tumors to form in many different organs, primarily in the brain, heart, kidneys, skin and lungs. There is no known cure for TSC. It most strongly impacts quality of life from brain tumors that can cause seizures, developmental delay, intellectual disability and autism.

Ruth was born with a tumor on her heart and has since developed tumors on her brain. Seizures, specifically infantile spasms, are a by-product of the disorder. Doctors expect she will next develop tumors on her kidneys.