Hope for a Little Girl’s Vision

A hospital emergency room brought Bill and Maura Brooks together. He was a fireman-paramedic. She was an ER nurse. Maura was on the other end of the radio when Bill had incoming patients. "She was the first person in the hospital we would make contact with. We began seeing each other socially and things progressed," says Bill. They married in 2005.

When their daughter Delaney was born in October 2006, the young couple would soon become immersed in their own adversity. Before the Brooks were out of the delivery room, they noticed that something wasn't right. "Delaney's eyes were roving, moving in rapid motions," says Maura. But the neonatal physician said that Delaney was fine, so the Brooks decided not to be concerned and took their new little girl home.

Delaney's unusual eye movements didn't subside, so at her two-month wellness checkup, Bill and Maura voiced concern to their pediatrician. He concurred that something was wrong.

And so began a physically and emotionally taxing search for the answer to what was causing Delaney's nystagmus - the clinical name for her involuntary eye movements. Over the next few months the Brooks took Delaney to see ophthalmologic and neurological experts in Chicago, Washington, D.C., and Baltimore. The diagnoses were inclusive. Some doctors believed the condition might be benign and eventually go away. Others thought that Delaney might have a brain tumor. One thing was becoming clear: Delaney's eyes were not responding well to light nor was she tracking moving objects well.

Eventually, Maura and Bill took Delaney to see Michael Repka, M.D., a pediatric ophthalmologist at Johns Hopkins Children's Center. He suspected that Delaney, still only months old, was affected by Leber congenital amaurosis (LCA), a retinal degenerative disease that causes children to be born blind or with severe vision loss. Repka ordered a special test called an electroretinagram, also known as an ERG, which confirmed the diagnosis of LCA. "We came back from that appointment devastated," says Bill.

The Brooks started doing a lot of online research, trying to learn everything they could about LCA. They came across the Foundation Fighting Blindness Web site, and Maura heard about FFB and the Northern VirginiaVisionWalk from a local woman with two blind children. "We made our own VisionWalk team and for the first time, it felt like we were really doing something to help," says Maura.

The Brooks admit that they still feel a little raw from their short but intense ordeal. "Your whole life you want to get married and have kids. You want to watch your kids go through kindergarten and turn around and wave to you when they get on the bus," says Maura.

Both Bill and Maura believe that Delaney will someday see. "It's just a question of when," says Bill. "With the LCA gene therapy trials going on in the U.K and Pennsylvania, it opens the door. It's just a matter of time before the gene therapy appropriate for Delaney becomes available. And if it isn't gene therapy, they are making advances in other areas."

Maura adds, "She's brought so much joy and happiness to our lives that if she doesn't see, she'll still be the perfect little girl and do everything she's supposed to do. She's happy and she loves life. She's a beautiful little baby."