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The book and its cover

by Sarah Gerace
Jessica Van Bruggen has undergone so many surgeries that her mom, Cathy, has lost count. Here, Cathy shows a picture of Jessica sitting up for the first time before the surgeries were completed.

When it comes to Jessica Van Bruggen, the adage, “Don’t judge a book by its cover” fits perfectly.

At first glance, you see the outside — something Jessica could not control. But inside, comes an inspiring story of determination.

So, read on because her story involves something that has affected fewer than a dozen people in the world.

Jessica was born with a syndrome called cerebro-oculo-nasal hydrocephalus, which causes malformations in the eyes, nose and brain. Where most have a nose, Jessica developed a crevice. Her brain growth was stunted as well, due to un-drained spinal fluid.

Countless surgeries have tried to fix all that.

But Jessica cannot see the outcomes because she was born without optical nerves and has been blind since birth. But with that came a heighten sense of hearing. She can hone in on an individual conversation in a crowded room.

The conversation her mother, Cathy Van Bruggen, wants focus on is the inside story.

She proudly draws attention to Jessica’s track ribbons, cheerleading awards and pictures of her at prom, which her mom did not know Jessica attended until a visit to Jessica’s school — a sign of her daughter’s growing independence. Jessica has driven a boat and ridden horses.

Jessica attends the Kentucky School for the Blind in Louisville, which led to more opportunities — a job at the Louisville Zoo and work at a Hard Rock Café, The Ronald McDonald House and Bear Grass Christian Church.

“That’s another thing,” Jessica’s mother said. “Jessica never cries or gets sad.”

Not bad for a girl who wasn’t supposed to live more than a couple days.

“I am doing pretty well then, aren’t I?” said Jessica to her mother.

With a heightened sense of hearing due to her missing three of the five senses, Jessica Van Bruggen enjoys spending time in her room listening to a contemporary Christian radio station or playing her electric keyboard. Her hearing is so heightened, she is adept at picking up on individual sounds or conversations in a crowd.
When Jessica Van Bruggen was younger, she had long curly blonde hair. But since starting at the Kentucky School for the Blind, she keeps it short because she is required to maintain it herself and short hair is easier, her mom explains. They wash it in the kitchen sink sometimes because it's easier than going though the task of showering.
Despite that she is not fully able to care for herself and is still trying to finish high school at the Kentucky School for the Blind in Louisville, 18-year-old Jessica is considered an independent adult. Jessica and her parents, Bob and Cathy Van Bruggen, recently spent a day in court so they could obtain guardianship of her.
During the week, Jessica Van Bruggen lives in a dorm at the Kentucky School for the Blind in Louisville, where she is a junior. While there, she is learning to become more self-sufficient and independent. Jessica’s parents expect her to do the same when she comes home to Science Hill for the weekend.
Due to dietary restrictions, most of Jessica's food must be pureed. But macaroni and cheese is one dish she loves and can eat without having to change its consistency.
"We would have never been able to make it through what we did if it weren’t for our faith," said Bob Van Bruggen, Jessica’s father. The Bruggens are grateful for support from their church family.
Jessica is the only one who lives downstairs in her family’s two-story house in Science Hill. Her parents, Bob and Cathy, decided this would be best because if she decides to stay with them permanently, she could have her own kitchen and entrance.
Jessica Van Bruggen only visits her home in Science Hill on the weekends. With her family moving to a new house a little over a year ago, she uses the walls as her guide as she makes her way around.
Jessica Van Bruggen has lived her life without three of the five senses, having been born with cerebro-oculo-nasal syndrome. She cannot see, smell or taste due to malformations caused by the syndrome.