Tess's Story

Tess Clark
Age 10
The Children’s Hospital
Genetic Disorder

Tess Clark was born with a genetic disorder so rare and complex that it was named after her. This sweet 10-year-old girl made her first appearance at The Children’s Hospital at just five days old; 37 surgeries would follow.

Tess was born with dangerous pressure around her brain. Doctors removed portions of her skull to make room for her brain to grow, but the most remarkable procedure Tess received was a new technique that moved her facial bones forward just one inch. A titanium frame was attached to her face with pins inserted into her facial bones. Her parents had to turn the screws each day to move her face forward.

“She likes to be the caretaker,” says Tess’s mom, Heather. Tess has a collection of dolls and each has their own medical condition ranging from Down Syndrome to cerebral palsy. “She doesn’t always have to be on the receiving end, she can be on the giving end. It takes her out of the position of being the one in need.”

Heather says her daughter’s approach to life has transformed the difficult years into a “wild ride” that has encouraged the whole family to feel blessed—particularly Tess, who titled her second-grade autobiography, “I Have the Best Life.”