Eve has kept her parents on their toes since she was born.

As a newborn, she couldn’t eat, wouldn’t breastfeed and struggled with a bottle. Her parents also learned that Eve was profoundly deaf. As Eve grew older, she continued to struggle with eating and was delayed in her overall growth and development. Eventually, Eve’s parents discovered that their little girl has an extremely rare genetic condition called pontine tegmental cap dysplasia (PTCD), which often results in hearing loss, vision problems, cognitive issues, feeding disorders, poor muscle control and slowed language development. Experts have reported only about 40 cases of PTCD in the world.

In April 2021, Eve had the corneal neurotization surgery on her right eye. Although it was hard for an active ten-year-old to sit still and recover for six weeks, testing of the nerve’s sensation six months later confirmed that the surgery was a success. Eve doesn’t have full feeling in her right eye, but there is enough to protect the eye against injuries and prevent the persistent ulcers that could have caused Eve to go blind. In September 2022, Dr. McCourt’s team did the surgery on Eve’s left eye. Later testing has revealed that this surgery was successful as well. She continues to wear glasses and hard contact lenses to protect her eyes and her reading vision is near-normal.

Due to Eve’s complex medical needs, she is supported by the Special Care Clinic at Children’s Colorado. The Special Care Clinic is where children with a variety of special healthcare needs can find a medical home, support community and care for the whole family. In Eve’s lifetime, she’s worked with almost every area of the hospital: speech, physical and occupational therapy, neurology, ear nose and throat (ENT), audiology, endocrinology, plastic surgery, ophthalmology, orthodontics, developmental pediatrics, and rehabilitative medicine.